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How to Serve on a Scientific Review Panel as a Patient Advocate

This resource was originally published by Cancer Today Mag.com by Bob Riter, Monica Vakiner and Carole Baas, here.

Cancer patient advocates who review research proposals can provide valuable perspective.

​Image​ by OnBlast​ / iStock / Getty Images Plus

WHILE IT’S MOST COMMON ​to hear about cancer patients getting involved in research by enrolling in clinical trials, patients and others affected by cancer can also help shape the direction of research by serving on scientific review panels.

These panels bring together experts to analyze research proposals to help determine which ideas will receive funding. Several organizations and government programs, including the Congressionally Directed Medical Research Programs, the Patient-Centered Outcomes Research Institute and Susan G. Komen, provide opportunities for grant review to patient advocates, including cancer survivors, patients and caregivers.

Opportunities to Apply Yourself

Advocates interested in becoming involved in a research review panel can explore options with government agencies and nonprofit organizations, including patient advocacy organizations that provide research funding for various projects.​

​While scientists and clinicians on panels analyze the science, patient advocates judge the merit of the study from a more personal vantage point, guided by a basic question: “Will the study make a difference in the lives of patients?” Everyone on the panel has an equal voice and vote to rank the research applications.​ ​

Initial Review

Advocates who are selected to be a part of a scientific review panel usually participate in an introductory phone call or webinar hosted by the panel organizers, who provide an overview of the process and answer any questions. Some review panels pair novice patient advocates with experienced advocate mentors. In these cases, novices can connect with and get feedback from their mentors.

Scientific review panels typically have a mix of approximately 20 scientists and two to four advocates. While each panel has its own process for review depending on the funding organization, panelists typically review approximately five to 10 research proposals, providing comments and scores. These research proposals generally include sections that describe the research plan, the researchers’ qualifications, a timeline, a budget and letters of support from the organizations where the researchers work.

Advocates are not expected to understand each scientific detail in these proposals. Rather, they focus on the potential impact of the research on the patient community. For example, advocates are well suited to offer feedback on the lay abstract, the one-page overview of the proposal written in nontechnical language. These abstracts provide a general idea of the research and demonstrate the researchers’ ability to communicate with a broader audience.

In addition, patient advocates can ask several important questions about the research: Does the grant application have a clear hypothesis? Does the researcher make a compelling case that the research is important? Do the researchers and institutions where they work have track records that demonstrate the research will be completed? Do the letters of support indicating institutional backing seem enthusiastic?

Optimize Your Time

Follow these practical tips to make an impact on scientific review panels.​

​Further CollaborationOnce the initial scoring is tabulated, panelists meet again—either virtually or in person. For example, the Congressionally Directed Medical Research Programs hold meetings for one to two days in the Washington, D.C., area. During the meeting, each panel reviews the top-scoring 20 to 30 applications in its assigned subject area.

The committee chair and a scientific review officer keep the panel focused and on schedule. The reviewers go over their rationales for scoring decisions for the proposals they initially reviewed. After discussion, panelists score each proposal.

The proposals are then rank-ordered based on the scoring and often referred to a different committee (commonly known as a program committee or integration panel) for final funding decisions. This committee takes a broad view and makes sure that awards are consistent with criteria outlined in the call for grant proposals. A few months later, the grant awards are typically announced on the funding organization’s website.

Serving on a scientific review panel allows advocates to influence the direction of research and to learn from—and become friends with—esteemed researchers and clinicians. Including advocates as collaborators with scientists and clinicians provides a wonderful synergy, reminding all parties involved that, in addition to being a disease that affects cells, cancer is also a disease that affects people.​ 

Bob Riter, a stage II breast cancer survivor, is a patient advocate with Cornell University Physical Sciences Oncology Center in Ithaca, New York. Monica Vakiner, a stage II invasive ductal carcinoma and lobular breast cancer survivor, serves as the director of client services at the Cancer Resource Center of the Finger Lakes in Ithaca. Carole Baas, a ductal carcinoma in situ survivor who lives in Southlake, Texas, is the national advocate for the Physical Sciences-Oncology Network of the National Cancer Institute.​

Beating Burnout: Self-Care Strategies for Patient Advocates

As patient advocates we are highly motivated to make things better for others. Our commitment and passion for the work we do can lead us to take on more activities with ever-increasing demands on our time and energy. All of this we do willingly, but this work doesn’t happen without a degree of personal cost. “If we are living with the condition, it is personal beyond measure,” writes diabetes advocate Renza Scibilia. “If we are caring for someone and advocating for them, there is a different sense of pressure and investment. And if we decide that this is ‘a calling’ and do it professionally, there is a difference again as we try to work within different parameters – the need to keep within the realms of what our work allows, and the less structured realities of actually living with a health condition.”

Commenting on the nature of patient advocacy, therapist Karin Sieger [1] points out, “this area can be heightened with emotions because lives can depend on it and often advocates themselves are directly or indirectly affected by patient care aspects or illness they are advocating for. It stands to reason that those involved in advocacy will be at the receiving end of emotional, mental and physically draining activities.”   Given this fact, it’s not uncommon to experience symptoms of burnout the longer we work in the field of advocacy.

“This is a real thing,” says patient leader and two-time cancer survivor, Shari Berman [2]. “Working without pay but as a patient leader is recipe for burnout especially when you feel like the needle isn’t moving.”  As metastatic breast cancer patient and advocate, Julia Maues [3] says, “Oh the burnout is so real and so unique. For once, many of us have the same illness as the people we are advocating for. It’s like advocating for better lives for prisoners while being jail ourselves.”

What is burnout?

Burnout is a state of chronic stress which occurs when we’ve taken on too much and in the words of Sieger, “overstepped our coping threshold.”  Scibilia describes how she has “found myself at that breaking point on more than one occasion when the system is failing me, and equally, when I see it failing others and I can’t help.”

One of the lesser acknowledged contributing factors to burnout, particularly in the field of cancer advocacy, is the emotional toll of losing friends to the disease. As Susan Zager, founder of the non-profit organization, Advocates for Breast Cancer (A4BC) [4] describes, “the biggest factor that’s caused me burnout is the intense loss and grief of losing so many friends and family to this terrible disease.” Research advocate, AnneMarie Ciccarella [5] agrees.  “I had to force myself to take a step back from actively supporting individual people in favor of more research advocacy because the losses became unbearable,” she explains. “There are times I’ll look at a particular blog post and start crying when I read the comments. I see comments from so many who are now gone and it’s heartbreaking.”

Pamela Katz Ressler, founder of Stress Resources [6], draws a distinction between burnout and compassion fatigue which can co-exist with burn-out.   “Compassion fatigue is generally rapid onset and often is the result of exposure to extreme suffering or witnessing traumatic events and situations,” she explains. “It can be one event or a cumulative exposure. Burnout can be described as emotional (and physical) exhaustion leading to withdrawal and disconnection from activities that once were meaningful. As advocates, we often expend energy, caring, and empathy as if it comes from a bottomless well.”

Spotting the Signs of Burnout

Burnout doesn’t happen suddenly. It creeps up on us over time, but our bodies and minds do give us warning signs. Symptoms can include physical and emotional exhaustion; impaired concentration; increased irritability or feelings of apathy, detachment or cynicism related to the work you are doing.  In the words of Scibilia, “I get tired. I get overwhelmed. I get discouraged. I get disengaged. I get disheartened.

Looking at some of the common factors related to burnout, Sieger points to:

  • An inability to say ‘no’.
  • The fear of putting our needs first and in doing so letting others down.
  • Taking on too much because we want to please, need to control, cannot delegate, want to micro-manage, cannot trust anyone else to do things for or with us, or have no-one to share responsibilities with.
  • We are not sufficiently in touch with our bodies, minds or emotions to see the tell signs.
  • We think it is a sign of strength and authority to be able to take on more and more.
  • We are afraid of becoming replaceable.
  • We find it difficult to accept, that we can no longer take on as much as before.

If you recognize your own tendency towards any of these factors, you may be at risk of burnout. Katz Ressler advises that “the first step in preventing burnout and compassion fatigue is awareness and recognition that the well of empathy, energy and caring needs to continually be refilled.”  The following self-care strategies and tips can help you, in the words of Katz Ressler, “refill the well of empathy to maintain your ability to advocate effectively.”

14 Self-Care Strategies to Address Burnout

“Different people have different ways that work well for them, says Sieger.  “Self-care, keeping health boundaries, a healthy diet, limited stress, moderate exercise, sufficient sleep and quiet down-time are the essentials.”

Let’s take a deeper dive into these essential strategies and add a few more to our self-care toolkit.

1. Set realistic expectations. Patient advocate, Liza Bernstein [7], believes a key element in managing burnout is to set realistic expectations. “One key to mitigating patient advocacy burnout is to recognize our role and agency in trying to manage it,” she says. “It is not easy, once you’re diagnosed with and treated for cancer to reconcile your new physical and emotional reality with the non-cancer person you used to be. So we have unrealistic expectations.” Bernstein describes her “burnout prevention strategy” at the 2018 San Antonio Breast Cancer Symposium. “It was a few months after a surgery and I wasn’t yet 100%,” she explains. “So I gave myself ‘The Talk’ and granted myself permission to do ‘as little as possible’ there; e., I paced myself, took breaks, and didn’t burden myself with ableist expectations. I did more tangible things tuning out the presentation & DM’ing people in my network to connect a distressed newly diagnosed person with a second opinion appointment. Seems like small thing but had big impact!”

2. Take breaks between big projects. Try to avoid jumping from one time-consuming project to the next in order to give your mind and body a chance to recover. “When projects turn into being a tedious chore, that’s a big sign of burn out,” says patient advocate Mary Pettigrew [8], who advises, “make it a habit to purge the unfulfilling, stressful activities, keep those of value and explore new territory/opportunities.”

3. Learn to prioritize. Ovarian cancer advocate, Dee Sparacio, wrote on her blog [9] about taking a step back from her heavy work-load of advocacy activities to focus on her priorities. She outlined a list of questions to help her decide which activities to prioritize:

  • How effective am I at doing that work?
  • Am I the only one doing that work?
  • If I am the only one can another advocate/person do it?
  • How much does the work benefit other survivors/patients?
  • How many people are effected by the work I do?
  • Do I ever regret having agreed to do the work and feel that way when I am doing it?
  • Does the work ever prevent me from doing other things – like hang out with my husband, grand-kids or dog?
  • Does that work bring me joy?

Remember, to quote Stage 4 melanoma patient, Kay Curtin [10], “it’s very easy to get caught up trying to fix everyone’ else’s priorities.” These questions can act as a helpful guide when it comes to reassessing your own priorities and what matters to you.

4. Say no. Self-care may involve you saying no more often, which, if you are like me, you might find challenging. There are always new opportunities or requests for your time, but an important element of self-care is the ability to pace yourself.  Before you say yes to the next request, look at the time and energy you have in a realistic way.  Follow Sparacio’s advice “I review my advocacy work and its impact once a year. I keep what brings me joy -not necessarily that which brings me exposure. The hard thing is learning to say no. If I say no I will provide the name of a new advocate voice. We need to cultivate new voices.”

5. Schedule time for yourself each day. “Schedule time to step away from ‘doing’ and shift to ‘being’. Take five minutes to turn off your phone, notice your breath and release muscle tension in your body,” recommends Katz Ressler. “I’ll hit the beach collecting shells to clear my head, but a simple walk around the block is helpful too,” says Ciccarella, “and when I have nothing left, I give myself permission to hit the sofa and turn on mindless, silly television.”

6. Feed Your Fighting Spirit. Registered dietitian and founder of “Dam. Mad. About Breast Cancer”[11], Cathy Leman reminds us of the importance of good nutrition in maintaining a healthy balance. “Balanced blood sugar for sustained energy and optimizing your immune system so you stay well are just two benefits of nourishing your body with quality meals and snacks,” she says. “Dried, fresh and frozen fruit, nuts, pre-washed and bagged veggies, whole grains and good olive oils and flavored vinegars can help you pull meals and snacks together quickly and easily.”

7. Control your devices. iPads, computers, and smartphones are essential tools in the patient advocate’s toolkit, but they can consume large amounts of your time and energy. Get in the habit of turning them off as much as possible, particularly before you go to bed at night.

8. Slumber Your Way to Good Health. “With all you have to get done, getting adequate sleep may fall to the bottom of your list,” says Leman “But when you don’t get the sleep your body needs (and deserves!), your overall performance suffers.” A good morning, she advises always begins the night before. “Create an evening ‘sleep hygiene’ routine that signals to your brain and body you’re ready to call it a day. When you’re well rested, you’ll have more patience, clarity of thought and focus to do your important work. And as a bonus? Getting enough sleep helps you make healthier food choices, which supports good health all the way around.”

9. Exercise Your Body’s Need to Move. “You need mental clarity, focus and stamina, and regular exercise is a simple way to tap those reserves,” advises Leman. “Even a 10 minute walk can clear brain fog, deliver nutrients and oxygen to every cell in your body, and build physical endurance for the long haul. Combine strength training, cardiovascular, core, flexibility and balance exercises as often as possible for a well-rounded fitness routine that will keep you moving forward.”

10. Take time for reflection. Taking time, whether it’s sitting quietly on your own, journaling, or speaking with a friend or therapist to reflect on what’s going on for you is important. “It’s important for all of us in this space to pause, assess, and take whatever time we need to reboot,” advises Ciccarella, for whom writing is “a powerful outlet to deal with all of my feelings. Identifying my feelings and their underlying cause allows me to accept the feeling and FEEL it – whether it’s fear, anger, grief -really, any emotion that drags me down.”

11. Don’t go it alone. Whether it’s peer support, or a professional, find a group or an individual who can support you on this journey. “I would even go as far as saying that having another independent professional to support us is essential,” suggests Sieger, “like supervision for therapists and counsellors, where we can talk things over, an outlet for our pressure and feelings.”

12. Intentionally step away from your “tribe” for short periods of time to refill your reserves, advises Katz Ressler. “Detribe” is a term she coined a number of years ago that may seem counterintuitive. As she explains it: “How can we step away from our ‘tribe’ when there is so much to do? Research shows that by intentionally engaging in self-care activities (think meditation, a walk in nature, a cup of tea with a friend) burnout can be reduced or eliminated.”

13. Choose what works for you. “You have to find what works for you,” says Bernstein. “It might not be a massage/spa, it might be doing what you love, giving back, being in nature, taking a nap, patting your dog… it really means being compassionate to you, as if you were your best friend.”  Katz Ressler echoes this and advocates practising a spirit of loving-kindness. “Allow yourself to be as kind and empathic to yourself as you are to others. What ‘gift’ would you give someone else to show they are appreciated? Give the same gift to yourself,” she says.

14. Knowing when it’s time to quit. Sometimes the best self-care is to quit. Sue Robins [12]  took the decision to do just that. “I still do advocacy but on my own terms, though writing and storytelling and with individuals. I handled my burnout by quitting the ‘patient engagement’ world.”

Take-home message

“Burnout in patient advocacy is real,” says Terri Coutee, founder of  DiepCFoundation.org [13] .  “It takes a tremendous amount of dedication and discipline with the potential of draining your personal emotional and physical energy.”  But the good news is that burnout is reversible. By putting the focus back on self-care, you can learn to manage your energy, time, and personal resources better.   Although, this too takes self- discipline. “I think it takes discipline (ie, effort) for many of us to remind ourselves we need to practice self-care regularly,” notes Bernstein.  As Coutee explains, “choosing the gym, saying no, and letting others take care of themselves are among the many actions requiring discipline. Choose the one that works for you so you can continue the work of patient advocacy with passion without burning out.”

Whichever path to self-care you choose, once burnout is recognized and attended to, it can become a chance to rediscover your commitment to the important work you do as advocates for better care for yourself, your loved ones and your community. Let these tips and techniques be a reminder that YOU are most deserving of the gift of self-care.


Resource Links:

[1] Karin Sieger

[2] Shari Berman

[3] Julia Maues

[4] Advocates for Breast Cancer

[5] AnneMarie Ciccarella

[6] Stress Resources

[7] Liza Bernstein

[8] Mary Pettigrew

[9] Dee’s blog

[10] Kay Curtin

[11] Dam. Mad. About Breast Cancer

[12] Sue Robins

[13] DiepCFoundation.org

How Do You Deal With Cancer Guilt?

It may come as a surprise to those who have not experienced cancer to learn that many cancer survivors suffer a form of “survivor guilt.”  Survivor guilt is most often associated with a reaction to surviving a traumatic event that others have died in, for example, survivors of combat, terrorist attacks, natural disasters, or air crashes. Survivors feel guilty that they have survived the trauma and others – such as their family, friends, and colleagues – did not.

When the Diagnostic and Statistical Manual of Mental Disorders IV (DSM-IV) was published, survivor guilt was removed as a recognized specific diagnosis and redefined as a significant symptom of post-traumatic stress disorder (PTSD).

It seems clear to me that a diagnosis of cancer fits both the description of survivor guilt and PTSD too. Cancer is a traumatic experience and no-one who survives treatment comes out the other side unscathed.    As so many of us know, the end of treatment is not the end of dealing with cancer.  When we’re going through treatment, we are simply trying to survive and don’t really feel the full emotional impact that being diagnosed with cancer involves. It’s often only when treatment ends, that the full impact hits us.

Cancer Related Guilt is a Complex, Multi-Faceted Emotion

We may feel guilt at “surviving” when others have not.  Dee Sparacio writes of her feelings at a time when a friend’s husband died. “How could I face my friend?  How could I, NED [No Evidence of Disease] for 5 years since my recurrence face my friend. Would she look and me and think – why are you still here and my husband is gone?”

Karin Sieger also describes her experience of feeling guilty after a relative died from cancer.  “A few years after my first cancer treatment, the terminal cancer diagnosis of a relative of mine, her gradual and then very quick deterioration and death filled me with the old feeling of guilt,” she writes. “In the presence of the bereaved mother my own mother felt guilty that her child is still alive. Cancer guilt can happen to anyone affected by cancer, including relatives and friends.”

We might feel guilty that our lifestyle choices somehow contributed to a cancer diagnosis. If we have discovered we carry the BRCA1/2 gene, we may feel guilty that we could pass this gene mutation on to our children.  On her blog, Audrey Birt describes how “breast cancer guilt has stalked me. Even when I’ve thought I’d put that beast to rest, up it pops in various guises. My guilt as a parent for causing my family to suffer has been a long term one. Carrying the BRCA2 gene tipped me again into a spiral of grief and guilt but somehow staying with that and recognizing that for what it is has helped me move through it.”

Cancer Guilt May Arise During Any Stage

I have also heard from patients diagnosed with an earlier stage disease, and patients who didn’t have to go through chemotherapy that they felt less “deserving” of sympathy.  One of my blog readers wrote, “I felt like a fraud when diagnosed as in I didn’t need chemo just surgery, radiation and tamoxifen so I didn’t want to make any fuss when so many others had REAL cancer.”

Guilt may also arise from a sense that what I’m doing with my life must have greater meaning if my survival is to be justified. Another of my blog readers commented, “I feel guilty that I am not making more of my life. When I was going through treatment, I made all sorts of plans for what I would do when I finished. I was really going to make the most of my life, now that I’ve been given a second chance…but I am too tired and overwhelmed to do any of those things.”

If any of this sounds familiar to you, you are not alone.  Feeling guilty at surviving cancer is a common experience and a perfectly normal reaction to what you have gone through. When I asked the question of my breast cancer community on Twitter “how you deal with survivor guilt?” I received some great answers.   I hope you will find comfort and practical advice in the quotes below.

“Cancer guilt was related to my family. Years before my diagnosis, my dad died of cancer. So they all had to do it again with me though a different situation. I felt huge guilt about my dad for not understanding. Counseling helped a lot. I would recommend counseling for sure. Or friends who listen and allow you to air the emotion.” Julia

Survivor’s Guilt

“I do feel a certain amount of “survivor’s guilt” since my cancer was stage 0 and no chemo or radiation-just surgery. Volunteering at a cancer support center helps me and inspires me filling me with hope – witnessing patients fortitude and determination to regain their health is so inspiring.” Susan

“The survivor guilt I felt was a sense of discomfort. I was quite possibly picking up someone else’s anger, frustration and despair at their own situation. But it is their situation, not mine. And since my second diagnosis I certainly have nothing to feel guilty about or to apologize for. We have a choice not do guilt, and also do not need anyone else to do guilt for us.” Karin

“As I’ve lost friends and colleagues to breast cancer I’ve grieved for them with an added complexity. What made the difference? Why did I survive and not them? In some ways I’m embarrassed I’m still here, four diagnosis later. It’s a form of madness to feel guilty you haven’t died, to feel guilty your treatment isn’t as bad as others, to feel guilty you’ve survived more than 20 years since your first diagnosis. I know it makes no sense but it’s easy to carry guilt along with everything else. But it serves no purpose and is fueled by a media that feeds a view of the cancer experience which is unrealistic, overly simplistic and laden with judgment.” Audrey

Overcoming Cancer Guilt

In his book, Travelling Light (The Columba Press) Daniel J. O’Leary quotes Bearwatcher, an Apache medicine man. “In the Apache language there is no word for ‘guilt.’ Our lives are like diamonds. When we are born we are pure and uncut. Each thing that happens to us in our lives teaches us how to reflect the light in the world; each experience gives us a new cut, a new facet in our diamond. How brilliantly do those diamonds sparkle whose facets are many, to whom life has given many cuts.”

So when you experience those feelings of guilt, contemplate the brilliant new facet in your diamond and reflect on the way that you can reflect that light in the world. You will best honor the memory of those friends who have died, by looking to the future and pledging to make the best life you can for yourself and those you care about. Life is a precious gift and you have been given the opportunity to recommit yourself to it. Now is your time to live; so armed with the lessons you have learned from your cancer experience, look to the future and shine with the brilliance of your diamond light.

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Resource Links:

 Dee Sparacio

Audrey Birt

Karin Sieger

Is there a hierarchy among cancer survivors?

Twitter Comments:

Julia

Susan

Patient Advocacy: Ten Tips to Develop a Stronger Social Media Presence

Social media is a powerful addition to our patient advocacy toolbox. We can use it to raise awareness of our cause, build a community of supporters, promote our key messages and highlight our patient advocacy activities. To help you strengthen your online presence and create more visibility for your cause, I’ve put together this list of ten actionable tips you can put into practice right away.

1. Optimize Your Social Profiles

Your social media profile should be considered a key element of your advocacy brand. What will people’s first impression be of you when they encounter your online profile? What might make them decide to follow you?   Review each of your existing social profiles with the following points in mind.

  • Is it time to use a more professional picture to represent yourself online? Upload an image that is clear and easy to see, like a head and shoulders shot, or your organization’s logo. Make sure to upload images with the correct dimensions for each social platform (check out this guide to social media image sizes).
  • You have an opportunity to personalize your profile on Facebook and Twitter by uploading a custom header image. Use this opportunity to bring more authenticity to your account, for example you might use a picture of yourself holding a sign with a hard-hitting message. Or perhaps there’s a project or campaign you are currently working on. If so, include an image to represent this in the header space.

Take Action: Complete all sections of your profile to convey a stronger message and identity.  Schedule a review date every few months to check your information is still current.

2. Focus on Being the Expert One Platform at a Time

Each year brings shiny new social media tools and new features for existing tools. It’s tempting to jump on board the latest social media platform with the aim of being everywhere at once; but rather than spreading yourself too thinly, focus on mastering one or two platforms really well before moving on to the next one.

Take Action: Look back on the past six months and ask yourself which social media platform worked best for you? Which gave you the most engagement? And which platform had the least engagement? Consider focussing your efforts on the high-performing platform and becoming known as the go-to expert on this channel before adding anything new to your social media mix.

3. Schedule Your Social Media Posts

The internet is global and if you want your message to reach further than your own backyard, you need to hit multiple time zones. Tweets have the shortest lifespan of any social media post. Even though the latest Twitter algorithm means that posts are no longer displayed chronologically, Twitter is fast-paced, and messages get buried quickly. To counter this, you need to share your post multiple times on Twitter to increase visibility. Scheduling tweets allows you to reach followers when they are most likely to be online (even if you aren’t there at the same time) and allows you to maintain a regular and consistent online presence.

Take Action: Use a scheduling tool like Buffer or Hootsuite to schedule your updates to reach more people, more often. Don’t just post the same update every time. Vary your updates by changing around the headline, highlighting a statistic or quotation or adding different images.

4. Curate Content

The ability to curate credible content to share with our communities is a key skill for patient advocates. Hereditary cancer advocate, Amy Byer Shainman believes “patient advocates not only have a responsibility to curate trusted content but that it is an imperative if you are even going to be calling yourself a patient advocate.”

Content curation is defined as the process of gathering information relevant to a particular topic or area of interest.  While this definition sounds simple, there’s a world of difference between simply gathering information and being an effective curator. A good curator knows how to find, aggregate, and synthesize reliable information, putting it into context for their communities and sharing it in a format that is easy to access and understand.

Take Action:  Set up Google Alerts for the healthcare topics of interest to you.  Google Scholar is also useful as it indexes most peer-reviewed online journals of Europe and America’s largest scholarly publishers.

5. Create Visual Impact

You’ve surely heard this before, but it’s worth reiterating: images matter — a lot. In an age when people’s attention span averages 8 seconds (that’s shorter than a goldfish!) visuals are memorable and effective because they help people process, understand, and retain more information more quickly.

Visual content is 40x more likely to get shared on social media than other types of content according to research by Buffer. Furthermore, people connect more emotionally with images than text, and in an increasingly crowded digital landscape images can break through the online content clutter. The type of visual assets you can create include images, videos, infographics, quotes and GIFs.

Take Action: Add an image to all your online posts — even those that are text-based. Create a strong visual identity and maintain consistency across all your images by sticking to the same colours, fonts, and layouts. Read How To Create Professional GraphicsEven If Youre Not a Graphic Designer for more tips.

6. Use Relevant Hashtags

Hashtags are a powerful way to increase your visibility on social media. According to Twitter’s own research tweets with hashtags show a 100 percent increase in engagement (clicks, retweets, likes and replies).  Jo Taylor, a moderator of the UK-based breast cancer Twitter chat #BCCWW, explains that “finding disease hashtags opens up connections. If you connect with others you will be able to meet others easily online and you will build and learn from there.”

Take Action: Visit symplur.com to find the relevant hashtags for your disease area. If you can’t find a hashtag related to your topic, you might consider creating your own. For more information on using hashtags strategically read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

7. Live-Report Conferences and Events

Reporting live from an event is a way of engaging your followers by sending updates about an event as it occurs. It allows you to expand the reach of in-person events to provide valuable insights to those who are unable to attend in person. It’s also a way to increase your visibility as an attendee and enhance your credibility.

Live reporting tools include live-streaming using Facebook LiveInstagram Live, and Periscope (Twitter’s live-streaming app).  You can also share posts to your Facebook page and share photos and video clips via Instagram and Snapchat during the event.

Take Action: Read The Advocate’s Guide to Reporting Live from Conferences and Events for more tips on live-reporting.

8. Take Part In Twitter Chats

Twitter thrives on its community and the more you connect with other users the more quickly you will grow your own following. Joining a Twitter chat is a super way to connect and engage. When you attend a Twitter chat regularly, people will get to know you and in this way, you can quickly develop and grow your own network of supporters.  If you’re not familiar with them, a Twitter Chat is a public Twitter conversation around one unique hashtag. This hashtag allows you to follow the discussion and participate in it.

Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people, for example #PatientChat held every other Friday at 10:00 am Pacific/1:00 pm Eastern. The chat will be hosted and the host will ask questions along the way to stimulate discussion and sharing of ideas. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. This is also a useful resource to find Twitter users to follow. In addition you will find past transcripts of chats on the website so you can familiarize yourself with the chat and its norms before taking part.

Take Action: There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. And “if you can’t find a tweet chat you enjoy,” recommends patient advocate, Annette McKinnon, “start a new one, register it @symplur and build a new community.”

9. Create a YouTube Channel

People engage with video more than any other form of content (written, audio, images, etc.). YouTube with more than 1.8 billion monthly active users remains the online video leader. 4 million YouTube videos are viewed every day, and the average session duration of 9 minutes and 28 seconds. That’s more than many other social networks.

Take Action: While producing your own video may seem daunting, video creation has never been more accessible through smartphones.  You can also create simple videos for your channel using free tools such as Adobe Spark and Lumen5 (see my YouTube channel for examples of Lumen5 videos).

10. Maintain a Consistent Content Creation and Promotion Schedule

Social media is an ongoing commitment. You need to post consistently to stay in front of your audience’s eyes and keep growing.  One key to maintaining a steady stream of quality content is to re-purpose what you already have. Check your blog’s analytics (or Twitter and Facebook analytics) to see the most popular posts you’ve written or shared.  Can you expand on these to include new research or thinking? Perhaps the content can be turned into an infographic or a slide-deck.

Take Action: Set aside one day each month to map out upcoming cause awareness days. Then use a simple excel spread sheet to create a calendar for social media postings. Include relevant hashtags and images.  A content calendar helps you maintain a consistent content production schedule, enabling you to plan for seasonal content, and annual campaigns.

Social media is an ever-evolving and fast-moving field, and with so much to learn and do, it’s easy to feel overwhelmed. You don’t have to implement all these tips at once. Try adding one new strategy to your social media plan each week and measure its impact at the end of each month. This way you will know which of these strategies are moving you closer to a stronger online presence.

Here’s to your social media success!

 

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed?

As the president of the International Pain Foundation, a best-selling author, and chronic pain advocate, Barby Ingle shares her advice for the newly diagnosed. For all our A Conversation With… videos please click here.

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed? from Patient Empowerment Network on Vimeo.

All I Want For Christmas Is Customer Service at My Doctor’s Office

I have this crazy dream. It’s about how, when I make an appointment to see my doctor – my primary care physician, my radiologist, my orthopedist, my whatever-ologist – the process is easy, honors my time as much as it does my doctor’s, and winds up running smoothly for both sides of the transaction.

The dream starts this way: I realize it’s time for an initial or follow-up visit to any of my doctors. I open up my browser, point it to my doctor’s website, and log in to the secure patient portal. The one where I can see all my prescriptions, my personal health record, make an appointment (using the handy calendar function), request a prescription refill, ask the nurse or doctor a question via email, or download a PDF of my health record.

In my dream, using the handy scheduling function in the portal, I select a date and time for my appointment. The portal auto-populates that date and time with my name and insurance/contact info, since I logged in and it knows who I am. The system asks me if any information has changed. I click “no”. If I click “yes,” the next screen asks me to make the changes, and “submit”.

I select the reason for my visit from the list of appointment types. I enter any information I need to related to this appointment request (i.e. “Doc, I have this pain…”). Then I click “submit” and the system sends me a confirmation email or text (I picked which one I prefer when I set up my profile on the portal). It also schedules me for a blood draw in the week prior to the appointment, sending me a confirmation for a walk-in at the lab.

The scene in my dream shifts to the day of my doctor’s appointment. I’m scheduled to be seen at 11:00am. I get a text at 10:00am – or an email, whichever I selected when setting up my portal profile – saying that the doctor’s running about 30 minutes behind. I can either come in at 11:30am, or select one of the alternate appointment times in the text/email and be re-scheduled.

I select 11:30am, and I arrive a few minutes before that time. Signing in involves scanning a key tag, or a bar code on a mobile app – just like the one you use at your favorite supermarket – which lets everyone in the practice, from the receptionist to the doctor, know that I’m there, and on time.

If the admin staff needs to talk to me for any reason, they’ll see me on their screen (usually because, in the day-before review, they checked the “confirm insurance details” or “update pharmacy info” or “collect co-pay” radio button) and invite me to have a private conversation. By using my first name only. No sign-in sheet (potential HIPAA violation) or yodeling my full name across a crowded waiting room (definite HIPAA violation).

By the way, in my dream the co-pay is collected by the system without having to get me or the staff involved. I’ve given the practice my credit/debit card number, and signed a consent form to allow automatic collection of my payment when I scan in for my appointment at the office.

I take a seat in the waiting room…for about 5 minutes. I’m called – first name only – by the nurse, who takes me back to an exam room. I scan in again in the room, and s/he checks my blood pressure, temperature, and heart rate using equipment tied into the practice’s IT network. Since I scanned in, the readings are loaded into my record instantly.

S/he and I chat for a minute or two, and then I’m left alone to disrobe. The doctor arrives minutes later, and proceeds with my exam. S/he enters information on a tablet, but spends most of the time talking to me about how I’m feeling lately, the results from my blood work, what my exercise program is these days, how about those Giants/Redskins/Bears/whoever, and if I’ve had any meds side-effects that I haven’t mentioned.

The doc tells me that my blood work shows everything’s A-OK, all my numbers look good. I’m up a few pounds, time to hit the gym a little harder to stop expanding midriff syndrome in its tracks. (It’s a dream, but it could become a nightmare.)

Face time. Real face time. Only about 10 minutes, yet I feel like I’ve been listened to, and engaged with, by my doctor. I feel like I’m recognized as a human participating in my healthcare, not a meat-puppet on a conveyor belt.

OK, I’m awake now. In a world where all of the technology tools to turn my dream into reality exist…but aren’t being used in any consistent way. Why not? Usually, I hear “they’re too expensive” or, my personal fave, “my staff doesn’t like technology.”

Guys, it’s the 21st century. It’s time for some technology-enabled user interface/user experience – called UI/UX in the design business – across the entire medical industrial complex. All of the technology I’ve dreamed out loud above exists, but it’s not in wide use across all medical providers. And EHR systems still don’t talk to each other, so even if one of my doctors has all of the tech-enabled features I’ve outlined working in their system, the data in their system can’t show up in another of my doctor’s systems … even if they’re part of the same healthcare provider system, on the same EHR.

Time to storm the castle, with people – the ones called “patients” – demanding actual customer service from the healthcare delivery system? I think so. Who’s with me?

Clinical Trial Mythbusters: Does the Clinical Trial Process Need an Extreme Makeover?

Does the Clinical Trial Process Need an Extreme Makeover?

Clinical Trial Mythbusters: Does the Clinical Trial Process Need an Extreme Makeover? from Patient Empowerment Network on Vimeo.

Downloadable Program Guide

Many cancer patients feel that the clinical trial process is in need of a serious makeover. One of them is Jim Omel. Jim, a retired oncologist living with multiple myeloma, turned patient advocate, makes it his business to understand myeloma from the inside out. He joins this program to share his experience in clinical trials and how he learned about his vulnerabilities as a cancer patient.

Also joining the discussion is, Dr. Michael Thompson, medical director for the Early Phase Cancer Research Program at the Aurora Research Institute and an active clinical researcher developing new treatments, particularly early phase (Phase I and II) molecular biomarker-driven clinical trials.

Join us for a meeting of the minds on debunking myths around clinical trials. How are patients protected within a trial? Will I as a patient be lost in the clinical trial system? Can I select my own arm in a trial? The questions are endless and, left unanswered, contribute to the barriers to trial enrollment.


Transcript:

Andrew Schorr:

Welcome to this Patient Empowerment Network program. I’m Andrew Schorr from Patient Power. I’m joining you from near San Diego, Carlsbad, California, and I’m so excited about this program, Does the Clinical Trial Process Need an Extreme Makeover? Having been in a clinical trial, and I’ll talk about my experience in a little while. I am a big fan, but I know that people have concerns, and I know that the percentage of cancer patients who are in clinical trials among adults is very low. How does that affect drug development and having the chance to get closer to cures for us?

I want to thank the financial sponsors for this program who provided assistance to the Patient Empowerment Network. They are Celgene Corporation, Astellas and Novartis. They have no editorial control, so what happens in the next hour is what we say, the questions you ask, what we hear from our experts who are joining us.

If you have a question, send it in to questions@patientpower.info. Again, if you have a question, send it in to questions@patientpower.info, and our wonderful producer Tamara will take a look at it, forward it to me, and as we can over the next hour we’ll be discussing questions you have already sent in. And we’ll have a very inspiring, I think, and provocative dialogue between our experts.

So let’s meet them. I want to take you to Grand Island, Nebraska, where my dear friend Jim Omel is there. He’s a retired now family practice physician. And, Jim, for years you’ve been a myeloma patient. When were you diagnosed with myeloma, and what’s happened along the way? You’re taking regular treatment now, I think, some treatment for the bone complications. How are you doing, and when were you diagnosed?

Jim Omel:

Andrew, I was diagnosed in 1997. It started off with a plasma cytoma at T10. I broke my back, I underwent a stem cell transplant in 2000 and had six years of remission. It came back in 2006, and I had radiation and lenalidomide (Revlimid), and it went away a while. Came back again in 2010, and I had radiation, bortezomib (Velcade), Revlimid, dex, and it went into remission. And since then, Andrew, I’ve been so fortunate that all I’ve been taking is bone-protective bisphosphonates.

Andrew Schorr:

Oh, good for you. Now, you were in a trial, but you decided not to continue, but yet you’re a believer in trials.

Jim Omel:

Oh, absolutely. Without trials our treatment wouldn’t change. When I had a full evaluation at Arkansas they suggested that I join their trial, and I did, and at the end of that trial was a tandem transplant. And I got to thinking and reading, and I didn’t really want to get that extent of treatment. I had a single transplant, and I dropped out of the trial. And that’s one of the things that I would certainly tell our listeners, that they can stop a trial at any time. They’re not bound to it. Ever since then, Andrew, I’ve had the good fortune of having fairly responsive myeloma, and when I had my treatments they responded to standard therapy. I certainly would have rejoined another trial if necessary, but I was fortunate that it responded the way it did.

Andrew Schorr:

Okay. And before we meet our next guest, I just wanted you to list some of the committees you’re on, because you’re very active locally and nationally on behalf of patients. So what are some of those activities you’re doing?

Jim Omel:

Well, I’ve been doing this since about 2000, so that involves a lot of activity. Peer review with the NCI was one of my main ways to get started.

Andrew Schorr:

National Cancer Institute.

Jim Omel:

Yes, and I progressed on to the Board of Scientific Advisors, which was a really good, important work with the director of the NCI. I’ve been an FDA patient representative for many years and was on the advisory board that brought Kyprolis or carfilzomib to us. I spend a lot of time each month for sure with the Alliance Cooperative Group working with Paul Richardson as we bring you new trials to patients. I’ve been with CINBR, Center for National Bone Marrow Transplant research for several years, several advisory boards. I’m on two pharma accompany advisory boards as they seek patient input.

Andrew Schorr:

Wow. All right. Well, the point of this, what I wanted our viewers to get, is that Jim is—trained as a physician, worked many years as a family physician, became a patient, eventually had to retire. He’s been through a lot of treatment and is very much an advocate for all of us, particularly in this process of trials. So we’re going to talk about the unvarnished truth about trials and see how we can make it better. Okay.

Let’s skip over to Milwaukee, Wisconsin, where we’re joined by Dr. Mike Thomson, who is very involved in research, and Mike has been very involved in all sorts of programs related to education. So, Mike, first of all, welcome to the program, and tell us a little bit about your involvement both locally in research and in education of other physicians nationwide and worldwide.

Dr. Thompson:

Sure. So not as impressive as Jim, but he’s one of my heroes who has really dedicated himself to improving the clinical trials process. I have an MD, PhD. My PhD is in pharmacology, and I was interested in pharmacogenetics and how individuals vary in their response to drugs, especially cancer drugs. I did my fellowship at MD Anderson and worked with a lot of myeloma doctors there and have worked in the community setting seven years in one place and about five years now where I’m located at and Aurora Healthcare in Milwaukee. I have been on the NCI Myeloma Steering Committee. I’m currently on the NCI lymphoma steering committee. I helped organize the ASCO 2016 meeting. I was the Chair of Education. As of June, I’m one of the editors for cancer.net around myeloma, so taking over from Paul Richardson who did that. So I’ll have about three years doing that and probably asking people like Jim for help to provide educational materials for people. And in the world of myeloma, I’ve created the MMSM or Multiple Myeloma Social Media hashtag to have Twitter chats, which I know some people don’t think are the optimal form of communication, but it is a way to get information out from experts and some opportunity for patients to ask questions. So I’ve been highly involved in social media, highly involved in the NCI and NCORP for increasing access to clinical trials in the community. And right now I am in the middle of an NCI designated clinical trial called EAA172 for multiple myeloma, which has gone through ECOG Executive Committee, the NCI Myeloma Steering Committee, and now we’re discussing with the companies and with Ctap how to bring that forward. And I think that’s—one of the things is how much effort it takes to bring some of these trials from concept to activation.

Andrew Schorr:

Okay. Now, we’ve mentioned this more rare cancer, multiple myeloma, not rare if you have it, but Jim has it, Mike specializes in it a lot. But what we’re talking about applies to the clinical trial process about broadly. So we may have people with us living with lung cancer and hoping to live longer and better, prostate cancer, chronic lymphocytic leukemia, like me, are also myelofibrosis. I’m a two-fer, if you will. There may be many different cancers among our audience, and the process applies to all. So we’re going to talk about that. So whatever it is, ask your questions, questions@patientpower.info. I’m just going to share a little personal story for a second, because I’m very passionate about it, and I wanted to mention it. And this is part of our Clinical Trials MythBusters series, and we have previous programs on Patient Power with lung cancer experts, experts in other conditions about the clinical trial process, so look that up on patientpower.info. There will be a replay of today’s program and also a downloadable guide with highlights that you can share, talk about it with your doctor, with other patients, with people you know and for your review. Okay.

So now my own story. I was diagnosed with chronic lymphocytic leukemia, the most common adult leukemia, in 1996—terrified, had no idea what it was. Didn’t know anything about what a trial was, didn’t know what the treatments were. Quite frankly, thought I’d be dead like within a week. I didn’t know. And so you start getting educated, and eventually that led to me connecting with academic medicine specialists and ultimately suggestion at the appropriate time of being in a Phase II clinical trial. I didn’t know what the phases were, we may talk about that along the way, and it was 2,000 miles from my house. So I traveled a number of times to be in that trial, and I had my local oncologist collaborating on that. And the end result was I had a 17-year remission. I had treatment again for chronic lymphocytic leukemia. It wasn’t until last year, 17 years. And I got the combination of medicines 10 years before that combination was approved. So I’m a believer.

The second thing I’d say about trials was I was in a second trial along the way, and I had deep vein thrombosis, blockages in the veins in my legs, for a blood thinner trial. And by being observed in that trial, that led to them discovering a second cancer which was at work related to those clots, myelofibrosis, and I was observed, so I liked the attention. It had nothing to do with what they were testing. It had to do with the observation you get. So, again, I love the attention of being in a trial. It may give you access to tomorrow’s medicine today, but there are things that may be broken. So, Jim, let’s start with that. Jim, what has been some of the frustration points for you the way the process has been today?

Jim Omel:

Well, I think one of the main things, Andrew, is that clinical trials tend to be designed to answer scientific questions. I think what they should do is be patient friendly. I think they should be designed to help patients. If you ask any researcher, what is the purpose of the scientific trial, clinical trial, they will say, to answer a question. If you ask a patient, they’ll think the purpose of the trial is to help patients. The—it may seem like a minor point, but it’s not. Patients need to be the center of them. We need to help patients understand what their contribution is to a trial. For instance, hardly ever does a patient hear how their outcome, what they did during a trial improved the final outcome of a trial. The patient needs to be centered. If we get the trial to a point where some of the questions are pretty obviously answered, rather than continuing to recruit patients just to be statistically valid, I think trials should close sooner. I think they should be more focused on getting patient care without necessarily the scientific question. I’m not a radical. I’m certainly a fan of trials. We wouldn’t be where we’re at without trials, but I think they should just become more patient-centered and patient-friendly.

Andrew Schorr:

Okay. Now, Mike, Dr. Thomson, so we know we can’t have new drugs approved by the FDA unless there are trials, Phase I, Phase II for sure, and often, typically, Phase III and sometimes even monitoring after a drug has been approved. I think you call those Phase IV trials. But from where you sit having been around this a long time what are some of your frustrations? What would you like to see be improved?

Dr. Thompson:

I agree a lot with Jim. I think another word to put on it is pragmatic trials. So I’ve been on a number of advisory committees, NCI investigator-initiated studies and pharma-directed studies. And when you have an advisory group with a bunch of academics they often think about the theories, and they think about what would be interesting to know. And increasingly both the NCI and others are getting not only patients but community physicians who will say I don’t really care about this question here. And we don’t think that it will fly and won’t accrue, and we know a lot of trials don’t complete accrual, so therefore patients are wasted, if you will, because we won’t have the information, we won’t be able to answer questions. So I agree. There are so many things get to involved it’s hard to break them all down, but part of the issue is answering a clinically meaningful question. I think the meaning should be patient-centered. Within those questions you can ask scientific questions that are imbedded in what are sometimes called secondary imports or co-relative studies. But I just last week was talking to some pharmaceutical leaders, and I said, you have to design a trial to answer a question people care about, and that’s patients and physicians. Because sometimes the trials are designed to get FDA approval, and they’re comparator arm if it’s a randomized study, is an arm that we don’t think is the current standard of care, and we have to do them in countries where they don’t have as many therapies and they don’t have as much access, so they’ll get them done. But then when they’re approved in the U.S. we don’t know what to do with the trial, because it’s not a question we’re asking. So that’s important. And I think if more studies are done not to get FDA approval but to go on pathways and to ask, what are the clinical branch points for decision-making, I think that’s when you’ll start getting good trials.

There are a number of other issues around the pragmatics. So there’s this NCI Match study, tons of people screened, very few people on the matched drugs, and they switched over to a strategy more like an ASCO TAPUR, where they waited for people that already had testing and then the people that had already kind of pre-screened couldn’t get evaluated for the study. And many, many more people went on study. The imaging and other things in the middle were not as rigorous as a usual clinical trial. It rolled quickly, and I think the point is you’re looking for big end points. Where you have to sort of go back to the classical, randomized, Phase III large study is when you’re trying to make incremental improvements, so, for instance, breast cancer where the cure rate or progression-free survival rate may be in the 90-something percentile rate, or even CML or other things where we’re doing so well you’d need a lot of patients and probably a standard design. But in many other areas you can do a variety of different techniques—Bayesian analysis, continuous reassessment models.

And one thing Jim mentioned was stopping for futility or if there’s an obvious benefit, and that is done but probably not as often as it should be. And the designs using what are called interim analyses or futility analysis with data safety monitoring boards or DSMBs, probably could be more robust. There could be more of them. I think people are afraid to do them, because they do slow the trial down, they slow accrual, and that has to do with stuff both within the trial as well as extrinsic to it. So there are a number of barriers and issues, but I think Jim’s pinpointed them as well.

Andrew Schorr:

Okay. Well, folks, you can tell that Dr. Thomson is a scientist. We’re going to unpack this and get down to the nitty-gritty. So, okay. So, Jim, so first of all, we mentioned this term “randomization.” So people wonder in cancer am I going to get the good stuff? I know that I’m sick, maybe like in your area, multiple myeloma, there have been lots of new medicines, but in some other areas not, like pancreatic cancer, for example.

So, say, I understand the standard therapy, and you’re testing it maybe against that, but I want to get the good stuff, because I’m really hopeful. I want to be a believer. So could you just describe where we are with randomization, because that’s a concern people have?

Dr. Thompson:

Absolutely, Andrew, and thanks for asking that question. That’s a real red, red hot button item for me. I maintain that if the patient has gone through the effort of studying their cancer, studying the possible treatments, and they’ve learned of a trial that’s opened that they would qualify for, they’re excited, they go talk to the principal investigator, and they say I want to be in this trial. And the PI turns to them and they say, well, we’ll flip a coin. You may get the medicine we’re going to be using, or you may get standard therapy. Just imagine how disappointing that would be. And when it comes to randomization, Andrew, there’s many, there are many trials that absolutely lack equipoise. And I’m afraid that scientists often use equipoise.

Andrew Schorr:

Now, tell us what that means. You’ve got to define that for us.

Jim Omel:

Equipoise basically means equal, equal balance within the arms. In other words, technically, officially the principal investigator doesn’t know which arm is best. And yet look at it from the patient’s standpoint. Let me give you an example. There was a trial in which patients had the choice of three oral drugs in one arm versus a stem cell transplant in another arm. Now, think about that. Think of the insurance ramifications. Think of the fact that it takes almost a year to really totally recover from a stem cell transplant, versus taking three oral drugs. How can anyone say that there’s equipoise in a trial like that? So how can you pattern your life with the flip of the coin or a computer randomizing you into one of those arms?

Andrew Schorr:

Wow. That’s, that’s an important issue. Another one is, Mike, you know, people are—one of the ladies wrote in on Facebook I posted about this program, and she said, well, the trials are not really accessible to me because I live in a rural area, and they’re only in the big cities. You’re in one, Milwaukee. But Jim’s in Grand Island, Nebraska, and some people if you set requirements for the trial, well, you’ve got to come see me, you’ve got to come to the clinic for a variety of tests with some frequency and somebody has to drive four or five hours and take off work and get babysitters and all that, it just makes it impractical. Where are we with more trials being available or having an aspect of it, like testing, closer to home?

Dr. Thompson:

So I work at a community setting. I’m at our kind of flagship hospital but we cover most of the population centers of Wisconsin, so I think we cover about 70 or 80 percent of the population. So that’s a huge issue for our site is that we—when I talk to sponsors including as recently as last week I say if we can’t do it at all our sites I’m not really interested in doing your trial.

There are exceptions of course. We’re doing a surgical trial or a radiation trial that has to be at one site or sometimes a Phase I trial with just a lot of blood monitoring, very intensive, they can only be done at a few sites. But in general I completely agree that we should try to have the drugs available to people in the community they live in, because that’s where their social networks are, right? So that’s where their family is. They can stay at home. They don’t have to just go into a hotel. They don’t have to pay for travel, and I think it’s better for everyone. And for companies, I’ve been trying to tell them that it’s more generalizable to the reality of where cancer patients are. So

85 percent of cancer patients are in the community setting and are treated there, and drugs should be accessible to them there. So, you know, both the using the CCOP mechanism or NCCCP, and now we have the NCI Community and College Research Program or NCORP. The whole idea is to increase that access to community sites. So this has been going on a long time. I think there were budget cuts, and so the U.S. and the way we’ve established our cancer budgets has been to decrease access at least NCI trials and usually need some of those NCI trials to support the research infrastructure to do other studies. So I think part of that, you know, a lot of these things you follow the money. And if there was more money for community research sites, you could hire more research staff to get these things done.

But I think we need to get them done in the community, because we know if you do early phase studies and they look promising in highly selective patients, then when you expand them and put them in the community you go from efficacy to effectiveness, and the effectiveness isn’t there because the patients are different. So there are all these things with real-world data and comparative effectiveness research at ASCO’s cancer link trying to get at some of that not on study to just try to get the data.

But we need to have access to people, and the way to make drugs cheaper, make them develop faster and answer more questions, both scientific and patient-oriented, is to get more people on trial. There’s a big example for immunotherapy drugs where there are so many immunotherapy drugs and trials there are not enough patients to get it done. So we’re going to enrolling in trials which don’t complete, or we’re not going to be able to answer these questions, so it’s going to stall and move it out the process of moving faster. In myeloma, we move very fast, but we need to do this in other areas too.

Andrew Schorr:

Right. So let’s talk about that. So, Jim, you know, the president had a big kick-off, HHS Secretary Azar I think just yesterday as we do this program, was before Congress and part of it was the discussion of can we lower the cost of drugs ultimately? And one aspect of it is can we speed drug development. So instead of all these trials languishing at the cost of millions of dollars, hundreds of millions of dollars, how do we speed it up?

So one is participation, certainly, but can the process be simplified as well, Jim? What work is going on there, so we can try to get these answers and get to the FDA and present the data quicker, and hopefully there’s been lower cost in getting to that point?

Jim Omel:

Well, as we’re learning more and more about each individual patient, personalized medicine and targeted therapy, we certainly should start relying more on biomarkers. Biomarkers can be a way to select patients that would particularly fit a given treatment.

We need to lower costs. We need to make trials slicker and faster. Single-arm trials are those in which a patient just get—all the patients get the therapy. They all get the same treatment. And FDA has actually approved drugs based on single-arm trials, a much faster and efficient way to get an answer.

The problem is that the costs are going to be there. When I think about Mike and all the work that he does in developing his venetoclax (Venclexta) trial that he mentioned, Mike has put in months or years, and it’s all above and beyond his normal time. I mean his day job is to take care of patients, so all of the work that he does to develop a trial is just remarkable in the extra hours it takes and the consistency that Mike gives to doing his work. We need to make the trials more efficient.

We need to use biomarkers. We need to make them shorter. We need biostatisticians to come up with ways to give us an answer without having to approve so many hundreds or thousands of patients to all these potential new treatments.

Andrew Schorr:

So, Mike, let’s talk about that. And, Mike, first of all, I want to thank you for your—well, both of you, but, Mike, certainly in the clinic, thanks for your devotion to this.

But continuing on that, so this was brought up by Jim, biomarkers, and I know in some of the blood cancers now we’re talking about more and more minimal residual disease testing, and we’re doing genomic testing to see what genes have gone awry, what’s our version of lung cancer or a breast cancer or a myelofibrosis or whatever it is.

And then do we qualify for a trial? What’s our specific situation? Do you feel that that sort of precision medicine testing and analysis can help refine this, so we know which trial is right for which person at which time and also some analysis along the way of how is it going?

Dr. Thompson:

Yeah, so at my site I’m the director for precision medicine, and I gave a talk at ASCO on precision medicine and barriers in the community setting, so I’m very passionate about that. And I think that is one of the ways you can try to get things done with smaller numbers of patients and things done faster. And part of this is alignment, right? So there’s different perspectives, a patient perspective, a payer perspective, a pharma sponsor perspective, the physician. There’s all these different perspectives, and I think it’s trying to get them all aligned and trying to get things done faster.

So, you know, there are some areas where we don’t know enough, and we can’t use biomarkers. But there are other areas where we have a biomarker, and there’s feasibility, and we can test that quickly. And if we are looking for a large effect size—here I am in jargon mode—but if you’re looking for a big, big hit, a home run, is to look for an alteration that is very specific and we think is—a drug can target. So-called targeted therapy—it’s a little bit of a misnomer.

So—and lung cancer has been one of the hottest places for this. So there’s ALK inhibitors, ROS1 inhibitors, EGFR inhibitors, and now BRAF inhibitors, HER2 targets. So lung cancer has exploded with precision medicine therapy, and the same with melanoma and BRAF. So, you know, I think even skeptics will say you don’t really need statistics if the prior therapies, nothing worked, and you give something, and 80 percent of people respond.

There are issues with precision medicines, but the main thing is not response rate but durability. And I think that’s going to be the next iteration of the NCI Match study, which is a large precision medicine study, is stop doing just these small groups of people who are showing activity, but then they relapse quickly. And I think it’s going to look at systems analysis, and how do we overcome resistance.

But one way to get at this and another different take on it is inclusion and exclusion criteria. So this has to do with access and individualizing and being patient-centric. Many of the inclusion and exclusion criteria, when somebody says, oh, I have lung cancer, oh, here’s a lung cancer trial, and they say, oh, you can’t go on the trial. And much of that is because there’s language that’s been cut and pasted from a previous trial which is not really pertinent.

So if the new drug is metabolized by the kidney, you don’t necessarily need to look at the liver studies. And we did a small study or I was aware of a small study done by Kaiser where if we improve the inclusion-exclusion criteria, accrual rate can go up 30 percent—so no cost to that.

Andrew Schorr:

Wow.

Dr. Thompson:

And Ed Kim led a publication about six journal articles in JCO about different aspects of inclusion-exclusion criteria including function, HIV status, age, etc.

Andrew Schorr:

Well, yeah. We had Ed Kim on the program just a week ago, as a matter of fact.

So, Jim, inclusion, exclusion, so first of all, we’re in this age where electronic medical records, it would seem that at your fingertips there could be some analysis of your record and some matching or offering of trials that could come out of an analysis of your results, genomic results. Do you have ALK or ROS or whatever, if it’s lung cancer, whatever it may be maybe JAK2 positive in myelofibrosis, what is various status for us?

And also broader inclusion criteria, and Mike was getting at that, saying some was just—excluding was just cut and pasted. And a lot of us patients would feel, well, that’s just unfair. So what’s your comment on all that, about inclusion and exclusion and analysis so we can be matched with trials more easily, can be offered to us?

Jim Omel:

Inclusion and exclusion criteria are really important parts of trials. They’re what get people into trials, they’re what keep people from being in trials. And, unfortunately, Andrew, many times the criteria are very defined, very narrowed, and drug companies especially want to do it this way to get the best effective appearance of their drug. They want to get approval. And yet in the real world, in fact most times, patients who would not even need inclusion criteria are the very patients that are going to be taking these drugs.

And Mike’s right. There’s too much cut and paste. If a trial takes a thousand patients to write a proposal or protocol, too many times researchers will just take the exclusion criteria that might have been from a previous trial and, like Mike said, cut and paste it when perhaps it’s not even necessary to have creatinine values or kidney values measured so precisely on this particular drug compared to the other one.

So those are the criteria that let people in or keep people out of trials, and they absolutely need to be widened. To make a drug more applicable to the general population we need to reflect the general population more in trials.

Andrew Schorr:

Right. Right. It’s sort of a Catch-22. So if somebody is at a drug company and they’re investing hundreds of millions of dollars maybe to develop a drug, and then that trial is languishing or taking longer to get there, somebody ought to go back and say, well, can I loosen up this criteria, get the big answer and do benefit to patients who may be very willing to be into a trial that doesn’t have all of these requirements that are not really necessary? And we get the answer and get it quicker, and help people along the way. I mean, it’s pretty obvious to me, and I hope they’re watching, folks.

So, Mike, here’s a question for you, though, and you work with people in the community setting. So we have patients who have written in and said, you know what, where I go to the cancer clinic they never mentioned trials to me, and Jim alluded to the extra time it may take for physicians and their teams is when there are trials. You have just treating people with current therapies, and then you’ve got research layered on top of that. It’s very time consuming.

But what about just awareness at the community level? What can we do about that so that wherever I go into a clinic they have a clear picture of what I’m dealing with, and if there is important research going on that relates to me I hear about it? Now, maybe they say, you’ve got to go to a university center, you’ve got to go to Milwaukee, wherever you have to go, but there’s that discussion.

Dr. Thompson:

Yeah, so with all of these, you know this has been analyzed in multiple different papers. We were on one looking at a trial log, trying to look at some of these issues, and what seems to be clear is when people are offered trials they tend to go on them at about the same rate, and that has to do—seems to be somewhat independent of socioeconomic status, race, etc., or geographic area.

So one of my colleagues, Dr. Verani, told us about—about this, about rural settings how do you get people on trial. So there are different barriers. So one is the trial, and like Jim said, if you can only do some therapy that you have to come in quite a bit for that limits the geographic area you can accrue to for most people.

There are site issues where if you don’t have enough research staff to be there enough the doctor doesn’t feel supported to spend time on it. There are physician issues where they may not care about trials, or they have too much people scheduled in clinic, they’re an hour behind, and they can’t stop to spend time on it.

Also in the community setting you may be seeing every type of cancer, and you can’t remember everything, versus at many academic settings you may only see one or a cluster of types of cancer. So if you’re seeing lung cancer all day and you have 10 trials open, you probably know those trials very well for lung cancer, because you don’t care about the CLL or myeloma trials, you only care about lung.

And then there are patient factors. So patients that are in rural Wisconsin may have different characteristics, and the reason they’re in rural areas, you know, the motivations is about, you know, going in for things and stuff like that may be different than people who have the capabilities to fly to Boston or Houston or New York, and they can do that. So all of those areas are important.

Now, one potential way to help mitigate some of those things is we have got a clinical decisions support tool, which is an IT product, which our physicians have to enter in what they’re going to do with the patient. So it could be observe, no treatment, hospice or various therapies. And when they put in the cancer and the stage it pops up with the clinical trials, the first thing that pops up. And so the physician doesn’t have to do the trial, but they have to say why they’re not doing it. And so we can track over time. It doesn’t necessarily help that individual patient, but that doctor has been aware of the trial, and we kind of get an idea of why people are not going on studies, and so that’s one way to do it.

Something we just did the last week is we had a different IT product where the NCI-matched precision study opened up five new arms with different targets for different drugs. So we looked back at the number of patients that had those targets identified within our entire system, and then we screened those to see how many people were still alive, and were their organ functions still good enough to go on these trials because of the inclusion-exclusion criteria, and we found several. So we’re now able to contact the physicians and the research staff to go back for these patients that had screened for molecular testing and now they have new options.

So I think there are IT issues that you can do systemically to try to take some of those barriers away, and then each of those points does have barriers which probably have different solutions and different ways of tackling. But one reason, you know, the accrual rate hasn’t gone up a lot is it’s not easy. It’s a complex problem, so there’s not going to be one single thing you do. There’s going to be many different ways to try to improve things, including patient education.

Andrew Schorr:

Yes, well, okay. To let’s flip that over. Jim, you and I are patients. So what do we want to say, and from your perspective?

So back at the clinic and from group has, so Mike is working on IT to identify trials and have it pop up on the screen for the doctor. Okay. Great. But we’re the ones living with the condition. What can we do so that promising research that we may learn about is available to us? We can see whether it matches up with us. Maybe we have to go down the road. Maybe we have to have a discussion with our doctor to even encourage them to have you us be in a trial. How do we make it happen, okay?

Jim Omel:

Well, of course, we all need to educate ourselves about our cancer. When I was in medicine school I had heard about myeloma, but I certainly wasn’t any expert in it. I had two patients in my practice that had myeloma. I knew sort of how to take care of them. But since I developed my myeloma, I have become my own expert. And as I lead my support group, Andrew, I make them experts. I teach this cancer to them so that they can make educated decisions.

Patients are very likely to go on the Internet, watching Patient Power. In my particular cancer, they’re going to go to the IMF and MMRF to look at myeloma trials and see what’s available. And they will take that information to their doctors, many times making their doctor aware of trials that perhaps they aren’t each advocating or aware of.

So, Mike’s right. There are many factors that keep patients from trials, but one of the things that patients really do themselves is educate themselves and perhaps even to the extent of bringing or educating their doctor about what can be available for their treatment.

Andrew Schorr:

Mike, I want to ask you about cost. So you mentioned different inclusion, exclusion, or what’s your liver function or this or that. So there is a problem where maybe certain drugs or certain aspects of a trial are covered, but then your insurance company, you know, that you have or Medicare or whatever, they say, oh, no, we don’t pay for that, but yet it’s part of the trial or it goes along.

So people have a concern about cost. I want to ask you about two aspects of cost related to testing sometimes. And then also are there programs that can assist with the logistical costs for patients as well?

Dr. Thompson:

So when I trained at Mayo Clinic and MD Anderson, and when I got—first went into practice I prided myself in not caring about cost. And then I realized you have to think about these things because you can bank—you know, we bankrupt, about 40 percent of people with cancer get bankrupted. So these are huge issues for people who want to keep their houses, that want to hand something down to their kids, and cost is huge, right? So that can either be throughout the whole course of standard treatment, or it can be trying to meet the cost of going places, trying to find clinical trials.

So the Affordable Care Act and various other national and state legislative initiatives have tried to make insurance companies pay for the standard costs in clinical trials. There are some carve-outs for smaller companies and things like that, and so this is, you know, not perfect, but in general insurance companies should pay for the standard cost of clinical trials. They should pay for standard imaging stuff too, and they try to get out of that. So it’s not a perfect world, but that should be covered. And any research-associated costs should be covered by the company. Even in some NCI trials some people disagree with what should be covered and isn’t, and it’s complicated. But in general, a patient, the research cost should be covered.

Now, that does not include travel, lodging and a lot of incidentals. So there are a variety of foundations, that could be The Leukemia & Lymphoma Society, that could be other organizations which could help with that. Individual hospitals or health systems might have ways of approaching that. And sometimes there are things you can do within the various companies. So there’s a new target called Entrek, and the company Loxo, I’ve heard will fly people who wherever there’s a site and pay for them to go on the study, which I think is amazing. That’s not true for every company and every drug being developed. But that’s one way to do it.

One of the issues that comes up with IRBs if you’re giving people money, are you coercing them? And, you know, if you’re just recovering the cost to travel, I don’t think you are, right? But those are one of the things that come up. But certainly there are lots of disparities. And just like in different countries, they don’t have access to the drugs we have as standard drugs here, and not all of these disparities are going to be fixed because we have—outside of cancer we have lots of disparities in the United States, but cost is a big issue.

And then value, which we’ve been increasingly talking about in the oncology community, which is utility over cost. And that’s more for once we’ve done the trial figuring out even if shows like it works, how do we figure out how to use it based on those characteristics?

Andrew Schorr:

Thanks. And also I wanted to mention that Mike Snyder is sending that question, answering why it cost so much. I hope that answers it.

We have—you know, some people wrote in as we were preparing for this program and they were bitter because they thought they had a spouse, let’s say, that had died in a clinical trial. And that relates to a couple of things. One is transparency. Is the data from a trial and any dangers that show up, is that reported and analyzed in public, Jim? And also what are the risks being in a trial, and what is the monitoring to try to have trials be at safe as possible. So, Jim, maybe you could talk about that from a patient perspective.

I want to make sure I know what I’m getting, I know what the risks are, and if any have come up along the way I want it to be reported, and I want to know that there’s a team looking out for me.

Jim Omel:

You have every right to expect that, Andrew. If you’re in a trial you have the right to get that knowledge if there’s new things that come up that we’ve learned about. And part of every trial as it’s being written, there has to be a data safety monitoring board. These are the experts who will do what you’ve asked be done. They will monitor the trial as it goes along. They will look for any safety issues. If there are patients who are developing liver toxicities, they will find this. They will point this out and perhaps see if the trial needs to continue or if something needs to be revised.

The presence of institutional review boards review whether trials should go forward or not. Patients who are in trials actually get very, very good medical care and medical coverage. In fact, I would maintain, Andrew, that they get better care than just standard care. They have experts that are watching them even more carefully than would be in a general routine care setting because they’re looking for these concerns and problems.

The person who mentioned the bad outcome, we can’t ever say that every trial is going to be perfect. There are going to be concerns. That’s why trials are done. But they’re relatively rare, and we do have boards and review organizations during the trial, not afterwards, but during the trial to be looking out for your benefit, Andrew, so that you’re not hurt by the trial.

Andrew Schorr:

All right. But let’s say this—and, Mike, for you. So, first of all, admittedly a lot of these trial start, and people are sick people, and they’re feeling maybe the trial is their last hope. We had a friend, Lisa Minkove, who died in the CAR-T trial for CLL not long ago. She had been very sick with CLL, so we’d hoped that it would work. It didn’t work for her, whether CLL won. And we know other people whereas the learning is going on about often powerful new medicines they didn’t benefit. Or in one case, there was a drug, venetoclax we know about, there were some deaths early on when the drug was far more powerful than was originally understood. So what do we do? I mean that’s the real world I guess of scientific study, but that’s a concern, you know, Mike, of people saying, oh, my God, I’m worried about being a guinea pig the unknowns on the subject of dangers.

Dr. Thompson:

So there are a couple of things. So whenever people say—it doesn’t come up as much recently about being a guinea pig, I say, well, guinea pigs don’t have choices, so. And so like Jim has said you can drop off a trial if you want to drop off it. But—so I think for adverse events and things that can happen, one reason to randomize people is that you do understand then if you treat someone with one thing and then another and the death rate the same in both, the drug is not causing it. That’s just the disease. And a couple years ago, there was a presentation from the group at Dana-Farber on the precision medicine program, and the issue was they were taking so long to get people evaluated that their performance status or how well they felt was good, and by the time they got through the evaluation many of them had died. Because the disease, you know, when you get to fifth, sixth, seventh-line therapy it can often progress very rapidly.

And so I think that’s one of the issues, that people can feel the drug did it, and it’s hard to know. And we get these—doctors get these things called adverse events reporting forms, and we have to try to come up with is this probably related, possibly related, and we also get these forms that say you have a patient on the study. The study is open in three countries, thousands of people on it. One person died of a heart attack, and you have no idea as the physician, well, is that the same rate as—you know they’re 70 years old. Is that the same rate as this other 70-year-old. So you need the enumerator and the denominator, and that’s what the DSMB or the Data Safety Monitoring Board is supposed to do, which is look at the data and say, is this beyond what we would expect? And they can stop the trial. They can do expanded cohorts. They can do things to try and figure that out. Now, we know from like even car companies lying about their exhaust systems that if the Data Safety Monitoring Board gets false data, well, you can’t fix that. But that’s pretty nefarious. Like that I think is not something that’s commonly happening and would be a very serious thing to happen.

Now, one thing for transparency is that almost all studies I’m aware of get registered on clinicaltrials.gov or maybe some other sites but usually that site, and they’re supposed to report out the outcomes. It’s not also a perfect process, but you should be able to see how long the study has been open, are there any complications related to it and those types of things. So this whole process is not perfect, but I would say in general the people at the companies are trying to develop something they think is going to work. They’re trying to do it safely, both to help develop their drug well as well as to avoid a bunch of regulatory issues, and the people on the Data Safety Monitoring Board are trying to do their best to answer these questions. But the smaller the number of patients which increasingly will take the trials we are doing and almost are aiming for, it’s harder to be definitive about when these things happen and what caused it.

Andrew Schorr:

Right. Right. It’s imperfect, as we said. So, Jim, Mike Thompson mentioned earlier, gave lung cancer as an example and, of course, across immunotherapy, there are so many companies endeavoring to move this research along. So let’s say you had lung cancer or one of these others where this is big, although it’s going on in the hematology area too, so a patient says, oh, my god, there are all these trials, and I might qualify for one, two, three, four. How do I prioritize? What do I bet on? And maybe my own doctor is doing more than one. So what do you say to patients if they become receptive to being in a trial and there’s more than one trial that they qualify for?

Jim Omel:

That’s a very good question, and it’s a nice kind of problem to have, to have choices of trials. I think, Andrew, the best answer is the patient needs to look at what they are looking for. Are they looking for longevity? Are they looking for something that’s going to expend their life? Are they looking for a trial that maybe will greatly improve their quality of life? Perhaps they’re looking for a trial that gives them one pill per week versus two injections a week. So there are certainly effectiveness end points. There are different things that patients find of value.

But to answer your question it really comes down to each patient needs to ask themselves, what is it I’m looking for in a trial? Do I want something that makes my burden lighter? Do I want something that’s going to extend my life? How much am I willing it accept as far as potential problems versus the standard of care that I know what the problems exist with if I don’t go on a trial?

Andrew Schorr:

Right. So that’s a question we got in, is they’re trying to assess that. One was about how do I prioritize? The other is, by being in a trial, Mike, is it going to make me sicker? Like, to do I have to go through the valley of the shadow of death to get, hopefully, to a better place, and how do you discuss that with your doctor when not everything is known?

Dr. Thompson:

Yeah, maybe I’ll kind of step back and say for phases of trials, Phase I, the intent—both ASCO and NCI say the intent of a Phase I trial is therapeutic. But the statistical design is to evaluate safety. A Phase II is to look at initial efficacy or how well it works, and Phase III is to compare versus standard of care the efficacy. So there’s other types of designs, phase 0, Phase IV and other things, but it used to be, I think, you know, I—we would say don’t go on a Phase I unless that’s the last option because you’ve already gone through the safety initial efficacy if it’s a Phase III trial. It costs a lot of money to do Phase III trials so fewer are being done now, and we’re kind of finding that in this era of precision medicine people are going on trials, and there’s no one rule, but I look at it as if it’s a study involving a lot of different groups of patients, a lot of—you know, it’s not individualized to you, I don’t know, but I think it will have less of a benefit probably than if it’s something like a study designed for BRAF melanoma back when that was a study and you have BRAF. Well, it’s targeted for you. It doesn’t mean it will work, but even if it’s an early phase, a Phase I or II trial, it’s really aimed at your disease.

And we’re finding this with venetoclax, with T1114, and there’s other markers, FLT3 in AML, all these things, and sometimes we find that the drug doesn’t work like we think it’s going to work. The ALK and ROS story in lung cancer, it may benefit other people that we didn’t recognize before, and that’s part of–we’re trying to find people besides T1114 that respond to venetoclax in myeloma because it looks like some people will. But I think as we’re getting more targeted therapy it doesn’t mean there’s no toxicity, but it at least has the suggestion that we’re targeted more at your specific cancer. And some of these pills can have as much toxicity as IV chemo s, but our aim is to decrease toxicity and increase efficacy. And I think, like Jim said, you’ve got to look at different trials and hopefully with a physician who has time to sit down and run through several scenarios. And some people will take the most aggressive therapy because that’s what they’re after, and some people will try something that’s easier and closer to home. So everyone’s values are a little bit different, and you have to try to individualize as a patients.

Andrew Schorr:

Right.

Dr. Thompson:

One thing about trial matching is besides clinicaltrials.gov, there’s myeloma and other groups that are doing these matching, so you can put in characteristics of your cancer and you can try to filter out and get a closer approximation, including at clinicaltrials.gov you can click on the states in the surrounding area or how many miles you’re willing to travel.

Andrew Schorr:

Right. I would mention, put in a plug for our advocacy group friends, whether it’s Lung Cancer Alliance, Bonnie Addaria Lung Cancer or the International Myeloma Foundation with The Leukemia & Lymphoma Society, you can be in contact with them directly and talk about your situation, and they will often be very aware of trials and how it’s starting to line up with these sub groups, subtypes of illness. Here’s a question we got it in with Jack. I just want to get in a couple more before we have to go. This relates to what you were talking about the National Cancer Institute’s Match trial, as I understand it, Mike. He said, regarding precision medicine I thought I heard that initial results have been disappointing for the NCI trial which treats patients with a specific mutation with a specific drug for that mutation. How does this impact precision medicine? You want to talk on that? Mike?

Dr. Thompson:

Yeah, so the people who are opponents of precision medicine would say that the SHIVA trial in Europe and the NCI Match trials were failures. I think you need to look at it a little more carefully. And if you do a huge screening and you don’t have many drugs you don’t have many matches and not many people are going to benefit. So there are some arms in match that match the accrued the number they wanted, and the drugs didn’t work well. So those were truly we think negative studies. But I think the things about Match are there is a huge interest in the community, and they had thousands or several hundred people screened when they only had a few arms opened, and those people weren’t matches, and it basically overwhelmed the system. And then they had to rejigger it to open up more arms. So I think we could—you know, pick holes in the design of the initial study, but I think it took everyone by surprise how much interest there was in trying to personalize these molecular therapies. And other iterations such as ASCO TAPUR, there’s company versions of it like Novartis Signature, and I think the new design of Match do allow for better match rates, and we’ll see how after they’ve adjusted how well they can hit their targets.

Andrew Schorr:

Okay. So that’s an example, where we’re going through a makeover there. Before we go, Jim, we have people watching from all over the world, and Mike alluded to sometimes trials done in other countries. Certainly they are. So we have somebody from New Zealand, we have people from other countries now. How do I access trials? Does it have to be in my country? Or what would you say to an international audience as far as finding out what’s available to them?

Jim Omel:

That’s a difficult question because every country has their own standards. Each country has their own boards that review. What is allowed in some countries are not even allowed. Observational trials can have more importance in some countries than others. Again, it’s a tough question. I think perhaps the person who asked it really needs to be again their own advocate and go online, go with their physician, go to their local support groups, go to their national groups, because they’re the ones that can give that local person their answer. There’s no one set answer for every country because there are some many variances.

Andrew Schorr:

Right. I do want to tell one of my favorite stories. I had a friend Jan Rin in Dublin, Ireland. She had a tremendous problem with more advanced chronic lymphocytic leukemia, one of the conditions I have, no trial for her there. She heard about Imbruvica being studied in Leeds, England, different health system, national health system. She was in Ireland, didn’t have it. She got permission from the Irish government to go over to Leeds and be in Dr. Hellmann’s trial there, and I think it saved her life. She would tell you that. So she had to be pushy. There were newspaper articles. She had to do lots of things to make it happen. It’s going to be varied by country but it starts with…

Jim Omel:

…drug like the one you mention, and it’s not available in the country, and there’s so much of that in myeloma. We have many, many drugs in the US that they don’t have in other parts of the world, and it would be so sad to be a patient in those countries, know that a treatment like that is available but not have access to it. So we all need to work to get these drugs available to patients wherever they’re at.

Andrew Schorr:

Right. Amen. I want to just get some final comments from you. We may just go a couple minutes over. So, Mike, the process is improving, I hope, you’re working on it. Can we feel confident that these gaps, if you will, improving it for prevision medicine, more awareness among the doctors wherever we may go, financial assistance, working with the insurance companies, are you working on it so that this process, we can have some improvement and hopefully have higher levels of enrollment and can get drugs approved quicker?

Dr. Thompson:

Yeah, I think we’re all very concerned about it. We should all be aligned in having more patients on trial, moving things faster and getting it done more cheaply. And I think we’re making progress. It’s not as fast as any of us want, but we’re all trying to move the ball forward.

Andrew Schorr:

Okay. So, Mike, it comes—excuse me. Jim, it comes down to us then as patients. We have to push, right? We have to see what’s within ourselves, what are we willing to do, understand our clinical situation and what’s going on for our cancer, and we’ve got to push, right?

Jim Omel:

And one of the things we need to push for are more interesting trials. We need to make pharma companies put up their drug against another pharma company’s drug. I think it’s so troubling when they’re afraid to take big steps. They just take little, incremental steps with their trials. If we can put drug A of one company versus drug A of another company—pharma companies are really reluctant to do those kinds went trials, and yet those are the kind that would be exciting to patients. I could give certain names of myeloma drugs, but we won’t get into that. It just needs—we need to get better, more interesting trials, and that will attract patients.

Andrew Schorr:

Okay. So I want to just put in a plug for something. We started something at Patient Power called the Patient Power Ambassador Program, and you can see it listed on our site, where you can share your voice. So we can all work with Jim, work with Dr. Thompson, and we cannot just be getting what’s right for us, but we can push on this process. So please consider doing that. Because I want to thank you, Jim Omel, for not just getting what’s right for you as a myeloma patient, but working on these government panels and with advocacy groups to try to advance it for all of us. Jim Omel, thank you for doing this.

Jim Omel:

Thank you, Andrew. It’s a pleasure to do this, and I’ll keep doing it.

Andrew Schorr:

Yes. And long life, Jim. Thank you.

Jim Omel:

Thank you.

Andrew Schorr:

And, Dr. Mike Thompson, thank you, Mike, for your leadership too and those extra hours put in, not just for programs like this but all the clinical research speaking to industry and the government to try to improve this process. Thanks for being with us, Dr. Mike Thompson.

Dr. Thompson:

Thanks for having me on, and I think this is the some of the most powerful patient educational material that people can get, this type of program.

Andrew Schorr:

All right. Thank you so much. So, folks, we’re all in this together. So you have your own issues about whether you know about trials, whether you want to be in a trial, that’s right for you or a loved one, whether it’s close to home, not close to home, so—but we have these discussions. So please look ongoing at the clinical trials mythbuster series. The let us know how we did today. You can always write to me, andrew@patientpower. Our producer, Tamara, T-A-M-A-R-A, at patientpower.info. And talk to your own doctor and your own healthcare team about clinical trials and where they line up, what are the obstacles, for you participating. And let’s see if we can improve this process and ultimately have more medicine that can lead to a cure for us be available sooner. Thank you for watching. We’ve done our best today, but this is an ongoing discussion. In Carlsbad, California, I’m Andrew Schorr. Jim joined us from Nebraska, Dr. Mike Thompson joined us from Wisconsin. Worldwide, we’re here for you. Remember, knowledge can be the best medicine of all. Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.


Please remember the opinions expressed on Patient Empowerment Network are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Randy Broad: Voice of the Patient

Board Member, Randy Broad, speaks at House Minority Leader Nancy Pelosi (D-CA) Press Conference

Patient Empowerment Network Board Member, Randy Broad, was invited by Minority Leader Pelosi to the Capitol building to give a ‘Voice of the Patient’ presentation on the subject of continued coverage of pre-existing conditions. Above is a clip from Minority Leader Pelosi’s new conference on June 27, 2018. You can see the full conference on C-SPAN here.


Transcript:

Rep. Joe Kennedy III :

For many of us, battling lung cancer would be the ultimate fight for our lives. For Randy, that fight was just beginning. Now, he fights for every single patient who has had to confront what he did. We’re lucky to have Randy with us today.

Randy Broad:

Thank you, Congressman. 10 years ago, this last March, I went to bed that night just like everyone in this room who go to bed tonight. The next morning, I woke up in a coughing fit, and I coughed up blood and I knew something was obviously amiss. Called my doctor. Went in and within seven days I had been diagnosed with Stage 3 Small Cell Lung Cancer.

Being 52, businessman, a father of two teenage kids, and considered extremely low-risk for such, this came as quite a shock. Fortunately at the time, my company provided excellent healthcare for me and my employees.

During treatment, I was deemed inoperable and the post surgeon meeting I learned I had maybe a year, two tops, to live. Well, as you can imagine that had a pretty profound effect on my life. So, the first thing I did was sell my business and focus on my family. Now, I was faced with personal healthcare insurance and was now paying $1,000 a month with $1,000 deductible and a significant co-pay. But in a few years from there, came along The Affordable Care Act and this changed everything with how I was insured for my health care needs moving forward, both insuring access and treatment with financial protections. Needless to say, I slept better that night.

I joined the Washington state Health Care Exchange, called Apple Health. We grow apples. My insurance premiums were cut in half while maintaining the exact level of care and I was able to maintain and keep my existing treatment team, at Seattle Cancer Care Alliance, which I cannot even begin to tell you how huge that is.

With the recent rumblings here in Washington D.C. to abolish The ACA, me, along with 16 million other cancer patients alone are extremely concerned about maintaining our access to quality health care coverage. Especially, when it comes to pre-existing conditions which we will all have. Health care is the number one cause of bankruptcy in The United States. That probably doesn’t come as a surprise to too many people in this room. And it’s going to get worse as those of us who will forever have a pre-existing condition, can be discriminated against it.

With The ACA, we had begun to experience what patient-centered care can be like and truly means. We cannot go backwards. To what it was like before the protections for pre-existing conditions. And I request Congress to protect The ACA so it remains available to other patients like all of us and like yourselves now and in the future.

Thank you very much for having me here.

Patient Advocacy: Six Steps to Craft a Compelling Message

Patient advocacy involves sharing your unique knowledge and experience of a disease or condition with the ultimate aim of raising awareness and influencing people to create a desired change.  This might include speaking at an event, telling your story in the media, or working with an organization to develop new treatment guidelines.  This month’s post will show you the steps you should take to create a compelling message to get key issues across to your audience.

1. Develop Your Key Message

The first step is to work out the key message you want to communicate. Asking yourself the following questions will help you focus on the main issues.

  • Why do I want people to know about this condition?
  • Is very little known about the disease?
  • Are doctors not very good at diagnosing it?
  • What is the impact of the condition for me and for others?
  • What improvements are needed? Locally? Nationally? Internationally?

An effective message is credible, clear and convincing – ideally you should be able to communicate it in less than one minute – for example, “Cancer-related fatigue is poorly understood, but has been reported in 30–50% of breast cancer survivors in the first 5 years after treatment.”  The recommended approach is to have one primary message supported by two or three secondary messages. Write down your core message first. The purpose of the secondary messages is to support the core message and to explain how it can be achieved.

Insider Tip

Patient advocate and blogger, Kay Curtin (@KayCurtin1), who is a stage IV Melanoma patient, suggests taking a look at what other organisations are doing before committing “precious time and resources on replicating what’s already been done.”  Christina Lizaso (@btrfly12), co-moderator of the #gyncsm Twitter chat, agrees. “Look first to collaborate and move things forward vs. starting from scratch,” she recommends, “then think outside of the condition – what is the most important thing for someone who has never heard of it to know?”

2. Identify Your Target Audience

Deciding who your target audience is and how best to reach them is the next step. There are several broad groups you might consider, including other people with your condition, healthcare professionals, the media, legislators or the general public. Which group you focus on depends on what you are trying to achieve.  The more specific you are in identifying your audience, the more effective your message will be. To follow on from my example above, if I want the guidelines for cancer treatment to include cancer-related fatigue, I might want to target healthcare professionals, other patient organizations who are campaigning on similar issues, and organizations like the American Society of Clinical Oncology.

3. Craft Your Message

A persuasive message can be summed up in three words “Make Me Care.” Sharing your story and the stories of others affected by your condition is the most powerful and compelling way you can do this.  As Jo Taylor (@abcdiagnosis) founder of After Breast Cancer Diagnosis says, “your story is everything – it raises awareness and shows the passion behind why you are trying to make change as a patient advocate.” Jo also believes your story connects you to others with a similar story, which in turns helps to build strong networks to bring about change. Dementia advocate, Pablo Barredo (@Diario1Cuidador) points out that stories help create bonds not just with patients but with their caregivers too. “Patients and caregivers want personal stories and people who will understand them, not scientific terms they may not understand,” he says.  “They need to feel connected to someone who speaks their own language and understands them.”

Insider Tip

When sharing your story, author and breast cancer blogger, Nancy Stordahl (@NancysPoint) points out that “you have to be willing to share from your heart. Be real. Be you. It’s all about being authentic. Always come back to that. Allow others to see your vulnerabilities. When others see that you’re authentic, you’ve made it easier for them to care, not just about you, but about your message(s). Once they care they’ll want to learn more.” Antibiotic resistance campaigner, Vanessa Carter (@_FaceSA) agrees that authenticity is key. “You have to keep telling your story from the heart,” she says, “which is not easy when you’ve repeated it for so many years. It takes a lot of practice. I think it’s one of the greatest arts of advocacy.”

Be prepared that telling your story might make you feel emotional and vulnerable, so think carefully about how much you are willing to share before you make the decision to share it.  Let the audience know your boundaries. Be mindful too of boundaries if you are talking about a family member. How conformable are they with you sharing their story or aspects of your own story that may affect them? In Nancy’s words, “each person needs to find her/his own voice over time, figure out what works and feels comfortable for you, and then go with it.”

4. Create a Compelling Call-To-Action

According to the WHO, “you cannot mobilize people unless you ask them to do something. Aim to craft messages that will convince your audiences to act – rather than messages that simply communicate what you want to say.   As Christina Lizaso reminds us, “awareness is not the end goal – it should be taking you to education and to action.”

Think about what you want your listener or reader to do when you are finished telling your story? What will motivate them to act?  Outline clearly the next steps they need to take.  “Awareness should immediately be followed by an opportunity for action,” says breast cancer researcher and advocate, Jamie Holloway (@jamienholloway). While a “dramatic personal story is a more compelling ‘hook’ than just rhyming off a list of facts (no matter how alarming the facts are!),” says Carolyn Thomas (@HeartSisters), author of A Woman’s Guide To Living With Heart Disease,  “a story by itself isn’t the message.”

Insider Tip

Alison Cameron (@allyc375) feels strongly that sharing a personal story should be a starting point for action, not the end goal.  “For me, the personal story has its place yes, but is a starting not an end point, “she says. “The crucial thing is not to fall into ‘inspirational patient’ mode but to work with those listening to come up with concrete actions for change. I got very weary of being parachuted in to ‘tell my story’ then kicked out swiftly after being patted on the head and told how “inspirational” I am. What changed as a result of all that? Not a great deal.”

5. Communicate Your Message

Now that you have identified your target audience and crafted your message you need to think about how to communicate it. The most straight forward way of communicating is directly such as a face—to-face meeting, an email, or a phone call.  Plan ahead for how you will share your story.  What supporting material will make your story stronger? Can you share research data to support your key message(s)?  You don’t need to use too many facts, and detailed data – pick the data that is most relevant to your audience to help make your point; for instance, state data would be important to a state legislator, while patient outcome data would be relevant to healthcare professionals.  The WHO recommends you use facts and figures wisely – if you use too many it can overload and confuse your audience. Balance statistics with stories that convey the human cost of disease.

You should also use blogs and social media to spread your message to a wider audience. Bear in mind the content that works best on the platforms you have chosen. The continuing growth of visual platforms, such as Pinterest, Snapchat and Instagram means that creating visual content is more important than ever. There is a reason the most widely shared content nowadays is highly visual because visuals can rapidly create an emotional response and convey an idea very quickly. The type of visual assets you can create include images, videos, and infographics.

Insider Tip

Jo Taylor created her own infographic to raise awareness of the signs of secondary breast cancer. There are many tools out there which can help you create appealing images without any design skill. I’ve put together a list of free tools here which you may find useful.

6. Promote Your Message

People are more likely to believe and understand a message heard from more than one source. Promote your key message(s) through social media and encourage people to spread it through their social networks too. Research shows that 69% of people share information because it allows them to feel more involved in the world, and 84% share because it is a way to support causes or issues they care about. By making it easy for visitors to your website or blog to share your content, you increase the likelihood that they will take this action. Make sure your social sharing buttons are clearly visible on your site. This is the most obvious (though sometimes overlooked) way to encourage readers to share your content. By placing the buttons on the side or at the end of the article, people will be more inclined to share the article.

Insider Tip

Use a tool like Click to Tweet in your posts. This useful tool generates one-click tweet boxes or links that can be shared through your website, your blog, or via email, to increase social shares.

Wrapping Up

Raising awareness is the first step on the path to change. Change won’t happen right away and it will require patience and persistence. Siobhan Freeney (@breastdense) founder of Being Dense, an organization which raises awareness of breast density and its associated links to breast cancer and screening, believes “awareness is the precursor to change,” and you need “resilience, research, passion and patience” to succeed.  If success feels slow in coming, don’t lose heart.  As triple negative breast cancer blogger, Catherine Foy (@mytripleneglife) points out, “without you realizing it, your story may have given hope to someone struggling.” Even if your story hasn’t changed the world, it may, to quote Kay Curtin, “change somebody’s world.”

Patient and Advocate Profile: Hannah and Carrie Ostrea

Before she was a year old, Hannah Ostrea was diagnosed with a rare genetic metabolic disorder, Neuronopathic Gaucher’s Disease type 2 or type 3. Hannah’s mom, Carrie, says the doctors told her to take Hannah home and to love her, but that she wouldn’t make it past her first birthday. “We became parents on a mission,” says Carrie who immediately began researching Gaucher’s and related diseases. Soon she began contacting researchers and sending samples of Hanna’s cells to them in the United States, Canada and Israel in hope that someone might find some way to help Hannah. Carries learn that very little was being done to understand the devastating effects of Gaucher’s and that the researchers who were dedicated to studying the disease were remarkably under-funded. Carrie also learned that there are a lot of people and a lot of children with rare diseases, but that there are not a lot of answers and not a lot of funding for any of them. She also knew, first hand, that there weren’t a lot of resources available to families with children with rare diseases. Care saw a need and she started taking the steps to fill it.

Her first step was creating the Little Miss Hannah Foundation (LMHF), a non disease-specific, Las Vegas-based, non-profit organization for children diagnosed with rare diseases, children with undiagnosed medical complexities, and children in hospice or palliative care. “All these diseases, they all suck. It doesn’t matter what the disease is.” says Carrie. LMHF provides resources for local children and their families and they also emphasize the importance of supporting the other children in the family. “We want the siblings to know they are important too,” says Carrie who adds that Hannah’s illness greatly impacted the lives of her two other children. “There should always be resources for a family like ours,” says Carrie who describes her experience as the parent of a child with a rare disease as isolating because of the lack of awareness, understanding and resources. The medical community doesn’t have answers and the insurance companies won’t always cover expenses because they don’t recognize or have never heard of the diseases. Through LMHF, Carrie is committed to providing families with financial assistance and the tools and support they need. It is LMHF’s mission to empower patients and their families and it is Carrie’s passion.

In addition to running LMHF, Carrie spent five years working with Global Genes, a rare disease patient advocacy group, and she is now using her business and marketing background as a consultant for organizations like LMHF. She says there are over 7,000 rare diseases and half of those have no support group. The ones that do are often started by patients or parents of patients, like Carrie, that are just trying to save a life. Often times they have little to no knowledge or experience about how to run an organization. “I educate them on where they need to go,” says Carrie who calls herself the big sister of rare disease groups. She mainly advises the groups on the business end of their organizations. As is true for many advocacy groups, funding and awareness are the greatest needs for rare disease organizations and Carrie says social media has helped tremendously. She says she has noticed a strengthening in patient groups and advocacy in the past five years. “Social media is a godsend to rare disease. It has given advocates a platform,” she says. “It just takes one person who is willing to put themselves out there to start a chain.”

Carrie continues to take steps to fill the need she saw when Hannah was diagnosed. She says there is a lot more work to be done, but that she will continue to share her knowledge to help others in whatever way she can. “We are very pay-it-forward in the rare disease community,” says Carrie. “There’s no time not to be.”

Hannah was three when she died. She spent the last seven weeks of her life at home surrounded by her family and in hospice care. She died in Carrie’s arms. The Little Miss Hannah Foundation is her legacy and so much more. “It’s our way of still parenting her,” says Carrie. “We just do it a little differently.”

To learn more about Hannah’s story and the Little Miss Hannah Foundation visit littlemisshannah.org.

Patient Advocate: Paul Ennis

Paul Ennis

Patient Advocate

In January 2012, Paul Ennis and his wife became caregivers to Paul’s parents, Mary and Thomas. Mary, who had severe osteoporosis, was showing increasing signs of Alzheimer’s disease. Caring for her was becoming too much for Thomas who had his own health problems, including rheumatoid arthritis and prostate cancer. Eventually, it became necessary for Mary to receive around-the-clock care. With his own health declining, Thomas made the difficult decision to move Mary into a care facility. Then, he made another decision that led to what Paul describes as a series of very impactful events.

Thomas, who was 91, decided it was time to die. He was in pain, he was suffering, his body was failing, and his doctors could do no more for him. He told Paul he was ready to go. So Paul, someone who is inclined to gather information, set out to see what options were available for his dad. “He had the right to say he’s done,” says Paul who learned that his dad could legally make a choice to stop eating and drinking and that there was a protocol in place for the family to follow. With the doctor informed and at-home hospice care in place, Thomas made his decision. He stopped eating on a Thursday in January 2015 and four days later he died peacefully in his home of more than 40 years. Eleven months to the day later, Mary also died at home, and Paul is still moved as he describes his mother in her final rest, in the glowing light of the living room of the home she loved.

But, Paul’s caregiving didn’t end when his parents died. Paul saw to all the details of their death care and burials, including building their caskets and taking them in the back of his pick-up truck to their cemetery plots.“It was a real old school way of doing things,” says Paul who learned about the option of home death care when shopping for caskets with his dad in 2014. “What I discovered about home death care was remarkable.” The experience, he says, was an intimate and healing way to honor his parents and to receive a form of closure.

Paul documented his story when an online global think tank asked for stories regarding how people could rethink end-of-life experiences for loved ones. Paul’s was one of ten stories selected out of 400 entries. He was inspired to create a business model for a non-profit organization to aid with death and dying, but rather than focus on a singular aspect of patient care, Paul wanted to help patients in as many ways as possible.

He remembered a conversation with one of his dad’s doctors. The doctor told him that he should consider patient advocacy as a career. As a former business consultant with a background in communications and marketing, it felt natural for Paul to become a patient advocate consultant. He is now spending time building his new consulting business. “Mine is a communications-based practice,” says Paul, who approaches each client by asking them what they want. “I don’t come in telling them what I want to do; I come in asking what they want,” he says. While caring for his parents, he learned the value of having a patient advocate and recognizes how difficult it can be for some patients to self-advocate.“Navigating healthcare is pretty complicated,” says Paul whose natural compassion makes him well-suited for the work. Paul emphasizes the importance of patient health, safety and dignity and says the most important thing to him is that people are able to make choices, explore their options, get educated, and stay empowered. He also continues to share his story and information regarding the Voluntary Stoppage of Eating and Drinking (VSED) and at-home death care in hope that someone may get comfort from his experience. “That’s why I told the story,” he says.

You can read Paul’s story here and visit his website at http://www.pwepan.com.

 

The 7 Habits of Highly Effective Patient Advocates

“Without doubt, you have to leave the comfort zone of base camp and confront an entirely new and unknown wilderness.” -Stephen Covey

Stephen Covey’s best-selling book, The 7 Habits of Highly Effective People was first published in 1989 as a business and self-help book. Covey presents an approach to being effective in attaining goals by aligning ourselves to what he calls “true north” principles. I was inspired reading this article by Melissa McAllister, to go back and read the principles behind the book to see how we might apply them to our advocacy work.

HABIT 1: Be Proactive

The first habit that Covey discusses is being proactive. I cannot think of a more apt description of patient advocacy – in order to be effective, we must be relentlessly proactive. Carolyn Thomas, a heart attack survivor, and author of A Woman’s Guide To Living With Heart Disease, tells the story of how her cardiac symptoms were dismissed when she was first admitted to the ER. She wonders had it been her daughter or sister experiencing the same symptoms, what would she have done? The answer: “screaming blue murder to get the help this other person deserved, with no thought whatsoever of being labelled as “difficult”. We need to be as strong and as diligent about getting help for our own medical needs as we’d be if we were trying to get help for our loved ones.”

HABIT 2: Begin with the End in Mind

Habit 2 suggests that, in everything we do, we should begin with the end in mind. We should envision the end result clearly and work with purpose toward achieving our vision of optimum care for ourselves and others.  One of the best ways to incorporate Habit 2 into your life, according to Covey, is to develop a Personal Mission Statement. Consider creating a Mission Statement to put your advocacy goals in focus and make your vision a reality.

HABIT 3: Put First Things First

In order to be effective, we must learn to prioritize our day-to-day actions based on what is most important, not what is most urgent. This means learning how to say no in order to focus on our priorities. As Covey puts it, “The key is not to prioritize what’s on your schedule, but to schedule your priorities.”  Dee Sparacio, author, blogger and ovarian cancer advocate, recently wrote on her blog about taking a step back from her heavy work-load of advocacy activities to focus on her priorities. She outlined a list of questions to help her decide which activities to prioritize:

  • How effective am I at doing that work?
  • Am I the only one doing that work?
  • If I am the only one can another advocate/person do it?
  • How much does the work benefit other survivors/patients?
  • How many people are effected by the work I do?
  • Do I ever regret having agreed to do the work and feel that way when I am doing it?
  • Does the work ever prevent me from doing other things – like hang out with my husband, grand-kids or dog?
  • Does that work bring me joy?

These questions can be helpful for us to look at our own activities and decide which advocacy roles we want to put on the top of our priority list.

HABIT 4: Think Win-Win

In our advocacy work, we will inevitably find ourselves in a situation where our wants and needs conflict with another’s. In order to practice this habit, we must commit to creating Win-Win situations that are mutually beneficial to each party. While recognizing this might not always be possible, this habit reminds us that we must at least try to understand the other person’s point of view and work if possible towards a mutually satisfying outcome.

HABIT 5: Seek First to Understand, Then to Be Understood

Communication is one of the most important skills we can develop. While many advocates can speak well, how many of us are good listeners? Listening and hearing are not the same things. Most people listen with the intent to reply, not to understand. Poor listeners are unable to separate their own needs and interests from those of others. They are more likely to interrupt and to jump to conclusions about what the other person is saying. Active listening requires critical thinking skills and emotional intelligence.  Developing the ability to listen deeply allows us to respond with an open minded empathy to another’s situation. We are less inclined then to interpret the other person’s words solely from our own perspective and frame of reference.

HABIT 6: Synergize

Synergize is the habit of creative cooperation. Covey describes this habit as one in which the whole is great than the sum of its parts: “It’s a process, and through that process, people bring all their personal experience and expertise to the table. Together, they can produce far better results that they could individually.”  From our own advocacy work, we know this to be true. We are stronger together. When we bring our collective voices, skills, and experience together, we achieve more. Covey points out that valuing differences is what really drives synergy: “When people begin to interact together genuinely, and they’re open to each other’s influence, they begin to gain new insight. The capability of inventing new approaches is increased exponentially because of differences.”

HABIT 7: Sharpen the Saw

Habit 7 is focused around taking time to renew our resources and health to create a sustainable long-term environment for our advocacy work. “Sharpen the Saw”, writes Covey, “means preserving and enhancing the greatest asset you have—you.”  In our desire to effect change quickly we can easily burn-out. Renewing ourselves physically, spiritually, emotionally and mentally will help us practice each of these seven habits more effectively. 

Some Final Thoughts on Being an Effective Patient Advocate

 I asked some of my favorite patient advocates to share their thoughts on what makes an effective advocate. Here’s what they told me.

“Passion, persistence, patience. Self-leadership, clear vision, courage (at least sometimes!) ‘We’ attitude, optimism, hope, trust, belief in basic goodness. Ability to listen, collaborate, cajole, criticise (constructively), take criticism.” – Anne Lawlor, Founder, 22Q11 Ireland

“Knowing when you need to talk about your personal view or experience and when you need to garner input from other patients. Nobody’s voice speaks for everyone.” – Alison Fielding, Chair Cardiomyopathy UK

“Passion, tenacity and balance. If you don’t have a passion for what you do, you tend not to give your all. Tenacity for it is inevitable that someone will tell you no or close the door in your face. When that happens you must remember your passion. Balance because you need a life.” – Anne Marie, lung cancer patient and blogger at These Are My Scars

“Perseverance, stand your ground, listen, don’t be afraid (to ask questions or admit you don’t know something) – remind others you want the same.  Understand your goals, what are you trying to achieve and why.” – Julia, co-founder #BCCWW

“Passion, commitment, belief in what you are doing, being a voice for not just you but many, speaking out, assertive, having your opinion doesn’t matter if it’s unique, a great communicator and networker, good listener, resilience and determination.”  – Jo Taylor, Founder, After Breast Cancer Diagnosis

As you can see so many of these responses echo the 7 habits above.  Patient advocacy requires self-belief and a clear vision for what you want to achieve. Above all, it requires dedication, persistence and commitment. I am so proud to be able to work among such passionate patient advocates. The work is hard and often goes unnoticed, but your reach and impact is immeasurable.

Negotiating Cancer: Tips From One Who’s Done It

Editor’s Note: This blog was written by Stefanie Joho, an advocate, speaker, and colon cancer survivor, for The Washington Post. You can see the original blog here.


At the age of 24, after two surgeries and two aggressive rounds of chemotherapy failed to cure me, my oncologist sent me home to die. When I was first diagnosed with colon cancer in 2013, I’d never even heard the word immunotherapy. I didn’t know that my doctors wouldn’t have all the answers. I thought clinical trials were last-ditch efforts rather than treatments that save countless lives. I didn’t know that a treatment geared to fighting my specific type of cancer and the genetic components of my tumor would go on to potentially offer tens of thousands of patients a revolutionary new path to surviving cancer in 2017.

Because I’m one of the very few lucky ones who looked into the abyss and made it out on the other side, I feel it is my duty to speak up and share some of the critical things that I have learned in what is now a new era in cancer care. Because a disease that should have killed me instead launched my career in patient advocacy.

[‘This is not the end’: Experimental therapy that targets genes gives cancer patients hope]

First and foremost, it is important to remember that every cancer is unique. Your journey will be different from mine. Your cancer is yours and yours alone. So think of the following points as “road signs.” They’re ones that I wish someone had shown me when I felt lost, with nowhere else to turn. The goal of this guide is to potentially help shape your thinking as you become an active participant in saving your life. More than anything, I hope it prompts you to question the presumption of cancer care for nearly a century.

1. The more we know, the more we can fight for our lives. 

We look to doctors in their white coats to be the experts — partly because, in a moment of such despair, we want to be able to look to someone to just give us the answers. But you should know that you will not find that person in anyone but yourself.

In the beginning of my cancer journey, I felt intimidated by my doctors and made several decisions that I now regret. I walked into appointments and agreed to everything instantaneously, without even considering a second opinion. As my cancer kept coming back and the treatments kept failing, I decided that the only chance I had to make it out alive would be to become an active participant on my journey. I would have to educate myself. I scoured the Internet. I became an “expert” not only in my specific disease, but also in the current cancer landscape.

I’m in no way encouraging you to become your own doctor and understand all the science. And I’m certainly not encouraging you to take everything you read on the Internet as fact. But in 2017, with the amount of accessibility to information, I’m encouraging you to seek it out. Never take anything at face value or trust blindly. Make informed decisions, not decisions based on fear. Walk into appointments with your doctors as an equal, not as a passive bystander. Being an informed cancer patient today is a full-time job. As with any job, that means learning new skill sets and finding the resources needed to succeed.

2. Asking questions is not making trouble. 

You will often be made to feel that being a “good patient” means not asking questions. But do not be afraid to speak up. Your life quite literally depends on it. Come into every appointment with a prepared list. If possible, bring someone with you who can take notes. If you are confused about something, ask. If you think of it later, write it down. Remember: You’re the one whose needs are paramount. You’re the one who is fighting for your life. Make every thought, concern and feeling heard. If it isn’t received the first time, say it as many times as necessary.

If you begin to develop a symptom from a treatment side effect or from the cancer itself, understand that it is the system’s job to help you get relief. If your doctors aren’t taking you seriously, do not believe their judgment over yours. And if you feel that your physician doesn’t understand or listen to you, then perhaps it’s time to seek one out who will. In my opinion, an individual who does not have empathy is not a physician.

3. No two cancers are the same. Become an expert in YOUR cancer. 

No two cancers are the same. Increasingly, knowledge of such individual variation is being shown to lead to more effective treatments. Ask your physicians and understand every type of genetic testing available to you. The more granular you can get about the specifics of your disease, the more you will maximize your chances of identifying the best possible treatment for your “personal” tumor. (Discovering the genetic biomarker of my cancer saved my life.) Continue to expand your resources so that you can be an expert in your own cancer.

4. Take note of EVERY potential side effect. Report everything. 

The incredible advances in cancer treatments have created a new set of challenges for clinicians, especially in how to identify the side effects. Given that these are new treatments, your doctors are not as practiced with them as they are with chemotherapy and radiation.

For example, immunotherapy is entirely different from traditional treatment. The former utilizes the patient’s own immune system, whereas the latter aims to attack only the cancer cells. Early recognition and proper management of side effects can make the difference between life and death.

Don’t hold back a single concern from your doctor and care team. Even if you think it sounds minuscule or irrelevant, your oncologist needs to know everything to best care for you. Listen to your body. Observe and report any changes.

5. Clinical trials are not a last-resort option.

The lines of treatment are rapidly changing, and, more often than not, getting access to cutting-edge treatments entails enrolling in a clinical trial. There’s an unfortunate misconception that clinical trials are reserved for those who have exhausted all other options. In reality, trials can actually offer access to the most individualized cancer treatment. And in fact, immunotherapy is more and more becoming the first line of treatment — and even being used before surgery to prevent relapses.

And just as individual patients can’t tackle their disease by themselves, we all ultimately must help one another by sharing and participating in clinical trials. Only 4 percent of cancer patients are currently enrolled in studies. Explore trials at cancer centers with a lot of experience in the type of therapy being tested. See if you have options outside of what has been standard of care for 70-plus years.

In the doctor-patient relationship, patients must understand that they are partners of science and as big a part of the cure as doctors. Without us, and our willingness to participate, medical advances would not exist. I will always feel a tremendous sense of pride for participating in a study that will save many thousands of people’s lives.

6. Cancer is not just a physical disease. 

It is critical throughout your journey to address the mental, emotional and spiritual aspects of this disease. Seek help, support and healing from other places, too. There are many schools of thought about why people become ill and what can be done to help them recover. It’s important to maintain your anchor in generally accepted medical principles, but don’t be afraid to look further up- and downstream to see if other currents of healing can add value for you and your care team.

As only one example among many, learning about nutrition made me feel as though I were actively fighting and doing something every single day to help my body heal.

7. Hope is a lifeline.

Don’t let anyone ever take that away from you. I believe in hope. Period. It saves lives. When your mind tells you that it’s over, the body has no reason to keep fighting. If you find yourself drifting in that direction, remember: “You haven’t failed the treatments; the treatments have failed you.”

Of course, doctors must tell their patients the difficult truth. But the specific words used to deliver such news matter. If your doctor is unable to provide you with hope or encouragement to keep fighting, find the hope and strength from within yourself and the loved ones around you.

8. None of this can be done alone. 

This might sound overwhelming. But with great power comes great responsibility. You are powerful, but you are not superhuman. Know your limits, and respect those limits.

Cancer is not a journey that you can navigate alone. The people and professionals with whom you surround yourself will alter the course of your journey. They will lend you strength when you feel you simply have nothing left to give.

If you physically or emotionally cannot actively advocate for yourself, then ask someone to be your advocate. When things were particularly bleak, my younger sister, Jess, often had to speak up for me. She knew what my doubts were, what my concerns were and what was important to me. She became my voice when I didn’t have one.

Create a health-care team that listens to you and cares about you and includes you in every aspect of your decision-making process.

Lastly, and so very importantly: Connect with others in the community. As much as your loved ones will do everything in their power to be there for you, they simply will not be able to understand the complexities of what you are grappling with on a daily basis. Making friends with other cancer patients (even through social media) enabled me to share the fears and anxieties that I was too ashamed or embarrassed to talk about with those who weren’t confronting their own mortality. I could speak openly about my side effects, the changes taking place in my body, my isolation. I could utter the words, “I’m ready to give up,” without the looming guilt associated with saying that to loved ones.

It certainly doesn’t have to be about only cancer, all of the time, but knowing that this kind of support exists is healing. It makes you feel understood.

Patient Advocacy: Understanding Your Illness

The news that you, or a loved one, has a serious illness can be a terrible blow.  You may be faced with an array of emotions ranging from shock to fear to anxiety. You will likely have many questions and concerns about what the coming days and months will bring, and the impact living with this illness will have on your life and the lives of your family. Although you may be reeling from the news, it’s important that you learn as much as you can about your diagnosis, its symptoms, how it may progress and what treatment options are available. In this article, you will learn which questions you should ask your healthcare team and where to find reliable and trustworthy information to become better informed about your health condition.

1. Obtaining Information From Your Doctors And Healthcare Team

Having answers to your questions can help you understand your illness better and feel more in control about your treatment decisions.  How much information you want is up to you. Some patients feel overwhelmed by too much information at this stage.  Others say they didn’t receive enough information.  While information upon first diagnosis is vitally important, you may be in shock and in a heightened emotional state which makes it difficult to fully comprehend all the information you are given. If possible, bring a trusted friend or family member to appointments with you to take notes. If this is not possible, ask your doctor if you can record the consultation so you can focus on listening, and go back and review what was said later.

Medical care is a conversation and to have influence in that conversation you have to speak up. Never be embarrassed to tell your healthcare team if you don’t understand something they’ve said. Sometimes doctors use medical jargon without realizing they are not explaining things in terms we understand. Repeat what the doctor has told you to be sure you understand and ask for clarification if needed.

Some questions to ask your doctor about your diagnosis:

  • What are the symptoms of this illness?
  • What should you do if you notice new symptoms or if existing symptoms worsen?
  • Do you need any further diagnostic tests?
  • What are your treatment options?
  • What are the side-effects of the recommended treatment?
  • What are the benefits vs the risks?
  • What happens if you do nothing?
  • Are there other treatment options available?

Finally, ask your healthcare team if they can recommend further reading, support groups and other resources to help you learn more about your illness.

2. Finding Reliable Information Online

As you move along the patient journey and better understand your illness, you may want higher levels of information. However, you may find the information healthcare professionals provide has not keep pace with your increased needs. This is the point where many patients turn online to seek more information. While the Internet can be a useful source of health information, it’s important to know how to critically evaluate the information you find online. Always discuss what you find with your healthcare team and ask them to put the information into context for your particular situation.

Here are some questions to help you determine the trustworthiness of online sources of information.

  • Who has produced the information?
  • Does the organization have commercial interests or another reason they are promoting this information?
  • Is the name of the organization and their aims in setting up the website clearly shown?
  • Does the site provide contact details if you have any questions?
  • Is the information on the website up to date?
  • Does it cite the source of the information that is being presented?
  • Does the site link with other reputable sites that give similar information?

3. Evaluating Medical News Reports

Whether it’s published in hard copy or online, medical news reports can mislead people into thinking a certain drug or treatment is the next breakthrough in a disease.  As patient advocates we must learn to read beyond the headlines to filter out the good, the bad, and the questionable.

The following questions will help you evaluate the reliability of medical news reporting.

  • Does the article support its claims with scientific research?
  • What is the original source of the article?
  • Who paid for and conducted the study?
  • How many people did the research study include?
  • Did the study include a control group?
  • What are the study’s limitations?
  • If it’s a clinical trial that is being reported on, what stage is the trial at?

Always try to read an original study (if cited) to critically evaluate the information presented. Understanding research literature is an important skill for patient advocates. For tips on how to read a research paper click on this link.

4. Learning From Peers

From helping us to uncover a diagnosis and finding the right doctors and treatments, to learning about everyday coping tips, turning to our peers can make all the difference in how we live with our illnesses.  Much of this peer-to-peer learning takes place through social media discussions on patient blogs and in Facebook groups and Twitter chats. On Facebook you can connect with other patient advocates and join Facebook groups related to your disease or health condition. On Twitter you have a greater mix of patients, physicians, healthcare professionals and medical researchers coming together to discuss healthcare matters. It is becoming increasingly popular for attendees at key medical conferences, such as ASCO, to “live-tweet” sessions. You can follow along on Twitter using the conference hashtag which you should find published on the conference website. Another way to learn on Twitter is to join a Twitter chat related to your health condition. Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project.

Final Thoughts

Understanding your illness is the first step on the path to advocating for yourself and others.

Being an advocate involves asking lots of questions, conducting your own research, and making your preferences known to your healthcare team. By doing this, you will be better informed and in a stronger position to get the treatment that is right for you. If this feels overwhelming to you right now, go at your own pace, and reach out to others who have walked this path before you. There is an army of patients who are standing by, ready to share their healthcare wisdom and practical coping tips with you. Seeking their advice will help lessen the fear and isolation you may be feeling, give you a sense of shared experience and connection, and help you feel more in charge of your healthcare decisions.

(Self)Knowledge = (Em)Power(ment)

“Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think.” – A. A. Milne

Finding yourself sitting on an exam table, or lying in a hospital bed, can be scary. Annual well-check visits to your primary care doc are one thing, but if one of those visits starts you on a journey through the maze of treating a diagnosis of cancer, or Parkinson’s, or [insert name of life-changing condition here], you find yourself feeling pretty overwhelmed.

My mantra has long been “be your own best advocate.” I learned this from my parents, who were e-patients long before that term was even coined. When I started my own cancer treatment journey ten years ago, I sprang into self-advocacy mode even before I had a confirmed diagnosis. I asked questions, worked to understand the answers, pressed for clarification when I needed it, on a “lather, rinse, repeat” cycle throughout the months between mammogram the end of active treatment; that process continues to today.

Since I just got my 10 Year Cancer-versary mammogram today (January 11, 2018), I figured my January PEN post would be a great place to share some of my how-to on being your own best healthcare advocate.

Let’s start with the basics, questions you can ask in any healthcare setting when a nurse or doctor outlines an issue, and a treatment plan for that issue, with you. This is straight from the Institute for Healthcare Improvement and the National Patient Safety Foundation – they call it Ask Me 3:

  1. What is my main problem?
  2. What do I need to do?
  3. Why is it important for me to do this?

This will work for anything from an upper respiratory infection to a badly sprained ankle to a hypertension diagnosis. It helps you learn more about the issue at hand, and opens up a dialogue where you can add information about your medical history, your family history, your preferences about medical treatment, and any concerns you have about treatment outcomes and side effects. e-Patient Health Literacy 101, if you will. The Ask Me 3 program link above includes some really superb health literacy materials, too. I encourage you to read through them, and to share them with your family and your community. I’m all about “the more you know” in healthcare.

If you want some e-Patient Health Literacy 201 questions to take to your next doctor’s appointment, I put together a handout I call the Must Ask List. I use this one-sheet constantly, at healthcare events where I’m invited to speak and in webinars where I share my thinking on patient engagement, health literacy, and health system innovation. Please feel free to use and share it – if you have questions you’d like to see added to it, let me know.

It takes a village to change the world. In the global village working to improve human health, it’s critical that we all share what we’ve learned, and look to learn from others with expertise in both the getting, and the giving, of medical care.

Doctors + patients x knowledge sharing = health and healthcare system improvement at light speed.

That’s my formula, and I’m sticking to it!

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