WEGO Health: Helping Others and Transforming Healthcare

WEGO Health:

100k+ Patient Advocates, Influencers & Experts –

Helping Others and Transforming Healthcare

Elevating the patient voice

With a mission-driven purpose, WEGO Health has supported its Patient Leader network’s advocacy efforts for over 10 years now. With more than 100k patient advocates, influencers and experts within its network, the company gives its members a communal place to elevate their voices.

Members of the network are provided educational resources, leader-to-leader connections, speaking engagements, rewards for paid projects, and community recognition through the annual WEGO Health Awards.

Not only can WEGO Health Patient Leaders connect with each other and tap into patient power, but members can also connect and collaborate with healthcare companies of all types across the entire industry. This gives the network a real chance at transforming healthcare from the inside out – and in a variety of ways

 

Connecting with healthcare companies across the industry

Take for example a market research company looking to uncover insights from a target condition area. WEGO Health’s Patient Leader network can recruit participants that not only meet the research criteria, but it can also identify, qualify and recruit those that have a vast understanding of the condition and a broad online reach.

Reaching influential Patient Leaders through an otherwise private network is what draws the most sincere and authentic findings for these types of research projects. WEGO Health conducted a study among 433 patients across seven conditions and found that 75% of respondents share through private means, such as member-only groups, private phone calls, emails and Facebook messaging.

There are many more use cases where Patient Leaders and healthcare companies have collaborated, to make a true impact on improving the healthcare consumer experience:

  • Product design and development
  • Usability testing
  • Online community building
  • Speaking engagements
  • Clinical trial recruitment
  • App testing
  • Social media campaigns
  • Influencer marketing
  • Patient advisory board
  • Health data tracking
  • Content creation

 

Quality of vetted WEGO Health Patient Leaders

The quality of Patient Leaders is vastly more skilled and knowledgeable than the average patient. They are keen on navigating the healthcare system and can speak on behalf of their online patient communities. Patients tell the “what” whereas Patient Leaders tell the “why” and “how.”

A typical Patient Leader in the WEGO Health network reaches an average of 15k people monthly per member. More stats on WEGO Health’s Patient Leader network:

  • 150+ distinct health conditions and topics covered
  • Members average 5-6 different online health communities and social channels
  • 74% are members of multiple online health communities
  • Members are 5x more likely to contribute daily
  • 82% agree: “I go online to raise awareness of health issues”

 

Collaborating with healthcare companies large and small

WEGO Health offers healthcare companies the chance to connect with its Patient Leader network through both their full-service and self-service offerings:

  • Full-service: WEGO Health’s Solutions team offers end-to-end project management for pharmaceutical companies. Projects cover market research and influencer marketing tactics.
  • Self-service: WEGO Health Experts is the first digital matching platform that provides healthcare companies on-demand access to a diverse network of vetted freelance Patient Experts. Patient Experts are especially unique because they have online influence, professional skills and patient experience.

When healthcare companies collaborate with Patient Leaders and tap into patient power, the results can be profound.

Through WEGO Health, companies can connect with a trusted network of over 100k Patient Experts, leaders, influencers and advocates with patient power: broad online reach and deep understanding of healthcare consumerism.

 

About WEGO Health

WEGO Health is a mission-driven company connecting healthcare with the experience, skills and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics.

WEGO Health’s network collaborates with pharmaceutical companies, startups, life sciences companies, non-profits, agencies, government and all types of organizations across healthcare. WEGO Health offers enterprise and on-demand solutions that allow organizations to leverage patient experience and expertise in the design, development and promotion of their products and services.

Milton Marks Family Camp – A Respite from Brain Cancer

For the past three autumns, a small gathering has taken place in the wild beauty of Sonoma County, California.  There, doctors, nurses, musicians, therapists, and body workers, among others, have convened to offer support and respite to a unique group of people – families living with brain cancer.

But unlike many specialized family camps that focus on a child with cancer, this one flips that model – offering support to a family with a parent with cancer.  It is the only one of its kind.

The diagnosis of brain cancer is a catastrophic event in the life of a family.  The brain is the source of a person’s ability to communicate and interact.  Certainly a breast or prostate cancer diagnosis can be devastating for an individual and their family.  But the patient’s essential personality can remain intact throughout the grueling treatments.  That may not be the case in glioblastoma, the most virulent and fast-moving type of brain cancer.  And it is incurable.

Brain cancer can strike people in the prime of their life, when their children are young.  During the months of treatment, a patient’s ability to speak, reason, laugh, or interact may be affected adversely.  The sight of dad or mom deteriorating physically and mentally can cause immense suffering for the family.

In 2010, Abby Marks found herself living this life with her husband Milton Marks and their three young sons.  After Milton’s death in 2012, Abby came up with the idea of offering a place of respite and connection for families experiencing the impact of brain cancer.  Working with the University of California Medical Center’s (UCSF) Neuro-Oncology department, where Milton had received treatment and care, the camp launched in 2014.

The camp’s mission is to provide connection, community, and fun!  It is a camp, after all.  There are sing-a-longs at the campfire, art projects, music, ropes courses, swimming, and more.  The UCSF doctors and nurses that tend to these families can also attend, adding a new dimension to the patient/medical professional relationship.  There are therapists and body workers available, as well as a professional photographer to document this island of respite in the long haul of brain cancer.  Families leave with sense of connection to others living this unique journey.

The Camp is now gearing up for its fourth year.  A few families are returning.  Most are new.  All are looking forward to spending three days being cared for, understood, and encouraged as they navigate this difficult journey.

[Disclosure:  Amy Gray is the operations manager for the Milton Marks Neuro-Oncology Family Camp]

Sources:

https://www.miltonmarksfamilycamp.org/

https://issuu.com/ibta-org/docs/ibta-2016/30

http://meetinglibrary.asco.org/content/173075-180

How the Federal Government Can Improve Clinical Trials Awareness

Editor’s Note: This post was created by the Coalition for Clinical Trial Awareness (CCTA) to highlight the Clinical Trials Awareness Week Policy Roundtable that they hosted on May 3, 2017.


Patients are eager for new and better treatments, yet more than one-third of clinical trials do not meet their enrollment goals. Finding solutions to this challenge served as the focus of the third annual Clinical Trials Awareness Week, held May 1-5, 2017. At a May 3 policy roundtable held at the United States Capitol, diverse stakeholders explored how the federal government can help to raise clinical trials awareness. Participants included:

  • David Charles, MD Steering Committee Chairman, Coalition for Clinical Trials Awareness
  • Sara Chang, Director of Policy & Advocacy, Research America
  • Renata Louwers, Patient Advocate & Clinical Trials Writer
  • Jonca Bull, MD Assistant Commissioner, FDA Office of Minority Health

The event also featured U.S. Representative Diana Degette, a health policy leader and sponsor of the 21st Century Cures Act. The event’s discussion produced four key concepts for improving clinical trials awareness.

Congress Should Act to Raise Clinical Trials Awareness

In an April 2017 letter to the Senate Committee on Health, Education, Labor, and Pensions and the House Committee on Energy and Commerce, CCTA encouraged members to use the Prescription Drug User Fee Act reauthorization process to:

Learn more about Clinical Trials Awareness Week 2017 at www.CCTAwareness.org.

Surviving Melanoma

I discovered my Melanoma 14 years ago in a hotel mirror. It was at a Courtyard by Marriott where the closet doors were mirrored behind the vanity. I was getting ready for a day filled with important meetings and my back was readily visible in the reflection of the mirror. It was a black pin sized marking. So, small but so obvious. I made a mental note to deal with it when I returned from travel, but one day bled into the next and I never made it a priority. I didn’t think much of it, only that it was black in color and something I had not noticed before.

It was several months later as I sat on the beach enjoingy the warm sun (how ironic since it almost killed me) when a friend mentioned it to me.  She thought I really needed to get it checked out. She said it was really black and concerning…. mental note #2 in the books.  Vacation ended and we headed home.  I made a few calls and since I had never been to a dermatologist I felt it was a daunting task.  I was embarrassed to admit my concern and lack of knowledge…I mean really…it’s just a dark freckle.

But it wasn’t!  Turned out to be a serious case of melanoma – stage 2. I googled it and it scared me even more.  Was I seriously going to die from this pen mark size of a mole?  It seemed impossible.  Denial was my first defense and only strategy. I had pre-op, counseling, operations and treatment and many, many sleepless nights, I’ll be sure to share even more in my future diaries – this is just the cliff notes.  So many emotions to share and victories to celebrate.  I think this will be a learning place.  A place to support and to be inspired.

Yesterday, I found myself in a similar setting (a Courtyard as a matter of fact) and it reminded me of my experience. It was a bit unnerving and while I am thankful to be here to talk about it today – I was filled with uncontrollable anxiety as I witnessed the view of my back…afraid I might see something new. Something so simple yet so impactful.

We live to tell! Sharing my story is therapeutic and my feelings are real.  All of you who read my tale and scribble in my diary make my fears more tolerable and I appreciate each and every one of you every day!

 

Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

Living Well with MPNs – Tips and Strategies for Managing Symptoms and Side Effects of MPNs

Tips and Strategies for Managing Symptoms and Side Effects of MPNs

As part of our Living Well with MPNs webinar series a panel of MPN experts and patients discussed managing life with an MPN. The panel shared advice on managing fatigue, itching, night sweats, enlarged spleen and other symptoms. The experts explained why symptoms occur and stressed the importance of communication with your healthcare team. Tune in to learn more.

Mapping the Patient Information Journey

Patients need appropriate information tailored to their specific needs at each step of the care pathway. This should begin on the day of diagnosis and continue on through treatment and long term self-management.  Your healthcare journey is a continuum and your information needs change as you move along the patient pathway.  When you are first diagnosed, you will have many questions, fears, and concerns. Having answers to your questions can help you understand your diagnosis 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, we may be in shock and in a heightened emotional state which makes it difficult to fully comprehend all the information we receive at the beginning.

Several years ago, when I raised the question on my blog of whether you can have too much information, Dr Deana Attai, Assistant Clinical Professor of Surgery at UCLA Health, pointed out that “it can be difficult to navigate all the information and options that are available”. Dr Attai recommends you “take your time, get organized, and if possible, bring a trusted friend or family member to appointments with you. If that is not an option, ask if you can record the consultation – that way you can focus just on listening, and go back and review the whole conversation later. Slowly sort through the information, do some research, and ask more questions if needed before you make a decision on treatment.”

Patients make the best decisions when armed with the right information.  Research has shown that access to the right information at the right time delivered in the right way leads to an increase in a patient’s desire and ability to have a more active role in decision-making. Shared decision-making (SDM) is the conversation that happens between a patient and physician to reach a healthcare choice together. Examples include decisions about surgery, medications, self-management, and screening and diagnostic tests. Decision aids that are based on research evidence are designed to show information about different options and help patients reach an informed choice. There are a number of tools available to support the SDM process such as information sheets, DVDs, interactive websites, cates plots or options grids.  A 2012 Cochrane review found that patients who use decision aids improve their knowledge of their treatment options, have more accurate expectations of the potential benefits and risks, reach choices that accord with their values, and more actively participate in decision making. It’s important that the information you receive is tailored to your age and specific needs. When I was diagnosed with breast cancer, the information I was given wasn’t tailored to my needs as a young woman with breast cancer. The information was aimed at a much older patient demographic and didn’t reflect the impact that breast cancer would have on me as a young woman living with the disease.

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. This previous article, How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News has many helpful tips and resources to guide you. Always discuss what you find online with your doctor and ask them to put the information into context for your particular situation.

Increasingly patients are turning to their peers online, using social media to seek out the experiences of other patients to help guide their healthcare decision making. Reading information in a brochure doesn’t compare to the ability to interact and ask questions in a social networking site.   US Department of Health and Human Services Chief Technology Officer, Susannah Fox, has labelled this trend as “peer-to-peer health care”.  She observed how “people living with chronic diseases (and their caregivers) are especially likely to say they look online for peer advice. They are pioneering new ways of pursuing health by banding together and sharing knowledge”.  This model of seeking and sharing information online has given rise to a new breed of expert patient – the ePatient. Dr Tom Ferguson who coined the term used it to describe patients who are “smart, motivated and experienced with an impressive and up-to-date knowledge of the best resources, centres, treatments, research, and specialists for their conditions.”

Once the initial diagnosis stage has passed, and you are moving through and beyond treatment, your information needs will also include every-day coping tips and long-term strategies to manage your care. This is where peer-to-peer support is particularly helpful. Research conducted by the Pew Research Center shows that one in five Internet users have gone online to find others who might have health concerns similar to theirs.  That percentage is even higher – one in four – among those living with chronic disease, or caring for someone with a disease. Not surprisingly, doctors remain the first choice for an accurate medical diagnosis. But the number of patients saying they turn to their friends, family and other patients for day-to-day advice, and emotional support is higher. Dr Ferguson observed “when it comes to aspects of illness that some clinicians may consider secondary – such as practical coping tips or the psychological and social aspects of living with the condition – some experienced (ePatients) can provide other patients with particularly helpful advice.”

Apart from social networks hosted by patient advocacy groups, medical facilities, and health sites, patients are blogging about their experiences, sharing stories of coping with diagnoses and dealing with their diseases on a daily basis. On Facebook, which continues to be the number one social networking site, groups can be private or public places where users share coping tips, ask questions and find a sense of connection. While Facebook groups and pages are useful resources for patients, Twitter takes the healthcare conversation to another level. Here you have a greater mix of patients, physicians, healthcare professionals, and medical researchers, all coming together in one virtual space to discuss healthcare matters. Use #hashtags to search for health-related information and join Twitter chats related to your health condition. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. I use Twitter as my personal learning network, a real time information resource in which I am globally connected with patient peers and health professionals.

It has been over a decade since I was first diagnosed with breast cancer. Today as I look back on how far the journey has taken me, I can chart my progress towards becoming a patient advocate through the quality of the information I received along the way.  My progress was advanced step-by-step by learning more about my disease initially from doctors, then through Internet searches and patient peers online. Now I have become the person sharing my experience to help others along the pathway. And I am not alone. By sharing your journey too, you can help shed light on a condition’s symptoms, prognosis, and other details for those still searching for the correct diagnosis or learning how to cope with an illness, its treatment, and long-term care. As advocates, I believe it’s part of our job to make sure that all patients receive timely, accurate and understandable information to help guide decision-making. We have a wealth of hard-won wisdom and information to share, so let’s share generously with others who are just starting out on their own patient journeys.

Ask yourself who can you help today?

May Is National Cancer Research Month

Advanced cancer research can take many twists and turns, and sometimes an approach that’s been discounted by others proves to be surprisingly fruitful.

John C. Byrd, MD, of The Ohio State University – a long-time grant recipient of The Leukemia & Lymphoma Society – started to research the effectiveness of a drug called ibrutinib on chronic lymphocytic leukemia (CLL) in 2009. While many experts predicted his approach would not be effective, clinical trials showed unprecedented response rates.

As a result, ibrutinib was approved for patients with relapsed or refractory CLL in 2014. But the story continues! A study last year by an LLS Specialized Center of Research (SCOR) team, led by Tom Kipps, MD, UCSD, resulted in FDA approval of ibrutinib as a front-line treatment for CLL patients.

As these examples illustrate, grants from The Leukemia & Lymphoma Society (LLS) are leading to real breakthroughs, not only extending patients’ lives, but also improving their quality of life. It’s also worth noting that many treatments developed as a result of past LLS funding are now being used for non-blood cancers and other serious diseases.

In celebration of National Cancer Research Month, The Leukemia & Lymphoma Society (LLS) shared these examples of promising cancer research. National Cancer Research Month (#NCRM17) recognizes the importance of cancer research and the contributions of researchers, physician-scientists, survivors, and patient advocates across the United States who are dedicated to the conquest of cancer.

It’s NOT Just Skin Cancer…

Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

I’m new to Treatment Diaries and since this is my diary, I want to share some thoughts that are now near and dear to my personal experience with this dreadful condition.  Let me start with what I’ve heard more times than I can count over the past decade and most often when sharing my Melanoma diagnosis with those who are uninformed.  It goes something like this – “What kind of cancer did you have?”  My response, “I was diagnosed with stage III Melanoma.”  The exchange – “Oh I think I’ve heard of that, it’s just skin cancer…right?”  In fact, I’ve had people tell me I was lucky to just have skin cancer.  Quite possibly the one thing you should consider never saying to someone with Melanoma.  Not only is it completely untrue it will do nothing to make the individual with the diagnosis feel any better about their situation.  The truth is, Melanoma is one of the deadliest forms of skin cancer.  It’s not just skin cancer.

So now that we are clear on it’s not just skin cancer, a few things I wish I would have known:

  • Research suggests that approximately 90% of melanoma cases can be linked to exposure to ultraviolet (UV) rays from natural or artificial sources, such as sunlight and indoor tanning beds.
  • However, since melanoma can occur in all melanocytes throughout the body, even those that are never exposed to the sun, UV light cannot be solely responsible for a diagnosis, especially mucosal and ocular melanoma cases.
  • Current research points to a combination of family history, genetics and environmental factors that are also to blame.
  • You can read this Melanoma Fact Sheet for more information!
  • Support for melanoma patients is incredibly important and connecting with those who relate brings much needed encouragement along with valuable insight.

Unlike other cancers, melanoma can often be seen on the skin, making it easier to detect in its early stages. Keeping track of the changes to your skin and seeing a dermatologist on an annual basis can be a lifesaving event. If left undetected, however, melanoma can spread to distant sites or distant organs. Once melanoma has spread to other parts of the body (known as stage IV), it is referred to as metastatic, and is very difficult to treat. In its later stages, melanoma most commonly spreads to the liver, lungs, bones and brain; at this point, the prognosis is very poor.  Again…it’s not just skin cancer.

Skin cancer comes in many forms and for numerous reasons.  Your job is to protect your skin.  Our skin is the biggest most vital organ we have to care for.  We can’t live without it nor can it be replaced.  It’s ours for as long as we live so we need to take the vitality of it seriously.  Stay out of the sun, look for changes and recurring issues to your skin even in areas that never see the sun, see a dermatologist on a regular basis and make sure to wear sunscreen all year around.  It’s not just skin cancer especially when it can kill you.  It’s a serious topic and I feel so very fortunate to be able to share my personal experience.  I hope to be a help to others newly diagnosed and an inspiration to those on the journey.  Let’s kick melanoma to the curb together…

Introducing Clinical Trial Mythbusters

Clinical Trial Mythbusters is a program run by patients for cancer patients, families and caregivers. The program is a live online series that gives attendees the chance to actively participate in the discussion, ask questions, and listen to answers from the panel of experts. The panel will include physicians, patient advocates, and patients, and will be patient-centric in nature. Attendees will have a chance to continue the discussion after the initial panel discussion ends, allowing for a more focused and intimate discussion. All videos of the initial panel discussion and questions will be recorded and posted here.

Panel discussions will focus on topics such as:

  • Basic understanding of trials
  • Debunking common myths
  • Safe, reliable sources of information about trials
  • What’s involved in trial participation and what’s it like to be in a trial
  • Finding the trial that’s right for you

Check our Events page for upcoming series!

Clinical Trial Mythbusters: Are Clinical Trials a Last Resort Treatment Option?

Are clinical trials only for patients who run out of treatment options? Watch as our expert panel answer questions as they debunk common myths around clinical trial participation. Tune in to hear the patient perspective and expert advice for making decisions about clinical trials.

Watch the video and learn:

  • What is a trial and when should I consider one?
  • What are common clinical trial myths?
  • If my cancer center does not offer a trial, what should I do?
  • How can I stay informed?
  • Is there financial assistance to be in a trial?

Clinical Trial MythBusters: Are Clinical Trials a Last Resort Treatment Option? from Patient Empowerment Network on Vimeo.


Transcript:

Andrew Schorr:

Hello and welcome to this Clinical Trials MythBusters program.  I’m Andrew Schorr from Patient Power joining you all the way from Barcelona, Spain.  We’re here for a conference.  You’re about to meet folks from across the U.S. and wherever you’re joining us.  Thank you so much for joining us.

Thanks to our wonderful partner, the Patient Empowerment Network, and also the Coalition for Clinical Trial Awareness and the Alliance for Patient Access.  And thank you to our sponsors, they all start with A, Astellas, Amgen and AbbVie.  They help make this program possible.

We have a lot to talk about in helping debunk the myths about clinical trials and hopefully raising awareness and understanding for you and your family, so you can consider a clinical trial and see whether it’s right for you.  And I can tell you, in so many areas of cancer now there’s exciting research going on. But if you want to get the possibility of tomorrow’s medicine today, and it happened for me with chronic lymphocytic leukemia, being in a Phase II trial way back in 2000, 10 years before the drug combination I received was approved.  I know it was life-saving for me.

And I want you to meet our first guest.  It was life-saving for him, and that is Pat Gavin.  Pat joins all the way from Marne, Michigan, which is outside Grand Rapids.  Pat, thank you so much for joining us on this program.

Pat Gavin:

Thanks for having me, Andrew.  Glad to be here.

Andrew Schorr:

Now, Pat, I want to go over a little background about you.  I believe that you’ve been treated for three cancers, right?  Pharyngeal head and neck cancer, in 2007, right?

Pat Gavin:

Right.

Andrew Schorr:

And also you were treated for melanoma 2008, and then in 2014 prostate cancer.  Now, you were in a Phase II trial for that pharyngeal head and neck cancer.  Do you believe it made a big difference for you?

Pat Gavin:

Well, that trial is absolutely the reason I’m here today.  My oncologist described it as we had the experience of witnessing a miracle.

Andrew Schorr:

Let’s meet one of our medical specialists who is joining us, who has been on our Patient Power programs before and our lung cancer programs, and that’s Dr. Charu Aggarwal.  She joins us from Penn Medicine, the Abramson Cancer Center in Philadelphia.  She’s a lung cancer specialist and also a head and neck cancer specialist, very active in trials.  Dr. Aggarwal, thank you for joining us.

Dr. Aggarwal:

Thank you, Andrew.  Thank you for having me here.  I’m delighted to be part of this program.

Andrew Schorr:

Dr. Aggarwal, you have a lot of research going.  It takes patients wanting to participate for us to ever have approved medicines, right?

Dr. Aggarwal:

Absolutely.  And I think that’s key in clinical trial participation, to get drugs to patients early.

Andrew Schorr:

All right.  And certainly in the area of lung cancer and many other cancers now there’s a lot happening, and smart researchers like Dr. Aggarwal are trying to prove some things that really seem like they would make a lot of sense, but we patients have to participate, be their partner.  I’ve seen that.

Dr. Aggarwal, lung cancer is a good example, but you’re an oncologist, and you see many different areas that are changing fast.  What would you say to patients about the opportunity, like I said, did it give me tomorrow’s medicine today?  Or, Pat, who feels he’s alive because of that.  You must see that a lot.  Doesn’t always work out, but it’s happening more and more, isn’t it?

Dr. Aggarwal:

It is definitely happening more and more.  Clinical trials are really accelerating our ability to get patients, like you said, tomorrow’s medicine today.  In the last five years, we’ve had upwards of eight to 10 drugs approved for lung cancer alone, and it would not have been possible without patients’ participation on clinical trials.

As we understand the biology of diseases better and as more medicines are available to us, the only way to access them and the only way to get FDA approval is through clinical trials.  And we’ve certainly seen that for lung cancer, but we’ve also seen that for head and neck cancer, and immunotherapy is now possible because of clinical trial participation.

Andrew Schorr:

Right.  And I’m living with two cancers, chronic lymphocytic leukemia, where there are many new drugs now, and now we’re looking at trials with combinations of new drugs.  And then I have another condition, scarring in the bone marrow, myelofibrosis, and I was very grateful that a new drug had been approved for that. And I’ve taken that drug now four-and-a-half years, a genetic inhibitor, and I’ve met patient number one, who is in that trial, and I give him a big hug.

Now, Pat, what do you think are some of the myths?  You know, you meet people all the time.  What do you think are some of the things that people just think are true but really aren’t?  Maybe you could tick some off.

Pat Gavin:

Well, one of the big myths out there is that there’s going to be a placebo arm, and there are not placebo arms to treatment trials, unless the standard of care would be a wait and watch, which is relatively rare.  So you’re always going to get either standard of care or a combination that includes standard of care and the test drugs or the—test drugs.  You’re never going to be left out there with just taking a sugar pill.

Andrew Schorr:

Right.  So let me go over that with Dr. Aggarwal.  People I think are—have heard about trials for other illnesses, but we’re talking about cancer now.  Your patients don’t get just a little white pill with nothing in it, right?  They either get quality care, standard of care, or they get something new.  Is that correct?

Dr. Aggarwal:

That’s correct.  So the era of placebo?controlled trials is almost over, and I say almost because in the metastatic setting or in the stage IV setting or incurable setting we almost always never use placebo anymore.  We are either randomizing patients to standard of care or meeting standard therapy, the chemotherapy, be it a pill, be it targeted therapy or immunotherapy, and we compare patients to that approach and introduce the experimental approach on the other hand.

Now, if there are patients that have standard of care as observation, then, of course, that observation arm does become our randomized arm.

Andrew Schorr:

Okay.  And may I ask what Pat was taking, or like I know in leukemia we have people who are in watch and wait.  So we have some people who are in watch and wait, okay.  So I get that.

Pat, what’s another myth, do you think?  So one was where you get a placebo, so we heard no.  So what’s another myth, do you think?

Pat Gavin:

I think there’s always a feeling that I’m going to be just a guinea pig, and that’s the one thing I think I hear most often from people is I don’t want to be a guinea pig.  I want to make sure that I’m getting a treatment and not being exposed to things that are unsafe.  Of course, there’s always a certain amount of risk with any trial that we participate in, but the chances of some of the things happening that you might see on the comedy TV shows just aren’t going to be there.

Andrew Schorr:

Okay.  Dr. Aggarwal, let’s go over that.  So, first of all, you’re at a major university center, University of Pennsylvania and Abramson Cancer Center.  What sort of panels in decision?making of smart minds are there going to whether you’re even going to go ahead with a certain trial?  I think you call it an investigational review board.  Tell us a little about the process of deciding whether you’re going to have a trial at your institution at all.

Dr. Aggarwal:

Yes.  So there’s a very thorough review of clinical trials, and these are vetted through several committees both in terms of ethical review as well as scientific review.  And, you know, when my patients say to me I don’t want to be a guinea pig, I really try and figure out what is it about the trial that they don’t want to do?  Is it the fact that they don’t want to get the investigational drug, or is it the number of tests that are involved in association with receiving that drug?

And I think, you know, most of the time, 80 to 90 percent of the time, I’m able to answer patients’ questions and concerns regarding their guinea pig concern, and most of the times actually it’s related to the fact that they don’t want to undergo extra tests or procedures that they wouldn’t have otherwise.

As soon as they hear that this is actually a drug where it may benefit them and they’re not just going to get a sugar pill, most patients are actually interested in clinical trial participation, because they’re here to really help themselves and to get something that can help their cancer.

Andrew Schorr:

So, Pat, another concern—well, I guess one limitation of people being in trials is people don’t even know about them, you know, not only don’t understand what a trial is but have not even been told that it’s an option, and that’s a problem in the U.S. today, isn’t it?

Pat Gavin:

Absolutely.  I even think it was a problem for me.  I didn’t know that a trial was going to be available in my home town.  If it wouldn’t have been for my oncologist recommending it to me, I probably wouldn’t have joined.  Fortunately, today I think patients are getting more knowledgeable about trials that are out there, and they’re hearing more and have the interest in joining a trial, and they’ll recommend it to their oncologists and tell them that they are interested.  But not knowing about them is a big problem.

Andrew Schorr:

Okay, Pat.  So for our viewers today, what question or questions would you urge cancer patients or family members to ask today so that they have the awareness of trials that might be right for them?

Pat Gavin:

Well, the first thing I would do is I would offer to my oncologist that I’m interested in being in a trial.  And I would ask what type of trials are available for people with my cancer, and what would you recommend as far as the trials that you see out there that you think is right for what I’m facing today?

Andrew Schorr:

Okay.  All right.  Well, now joining us I think is Mary Ellen Hand, who has been at the Rush University Medical Center in Chicago for many years and also works with lung cancer patients but has been in oncology for many years.  Mary Ellen, first of all, thank you so much for being with us.

Mary Ellen Hand:

You’re welcome.  Sorry for the technical difficulty.

Andrew Schorr:

It’s okay.  Thank you for being with us, Mary Ellen.  So from your point of view, what’s a myth that comes up a lot for people?  We’ve been talking a little bit with our other guests about whether with you get a placebo, no, whether you’re a guinea pig, no.  Are there other myths that you can think of that you really want to talk about now?

Mary Ellen Hand:

I think that people sometimes come to this thinking I don’t want to do something because I don’t—as you’re saying, a guinea pig or be in uncharted territory as opposed to having an opportunity to have a therapy that may be more impactful in their disease and help control their cancer better.

And, secondly, I will have people who have an out?of?network insurance or something that doesn’t allow them the flexibility to maybe even come to our institution or somewhere else for their therapy, and they think cancer trials are free care, anything you get if you’re on a trial is free.  And what is true is that ordinary customary charges for things like blood tests and scans and doctor appointments and the medicines that are approved are billed to your insurance, and what the company might provide that’s being tested would be the thing that’s provided free to you.  And so I think that that’s a misconception that many people have.

Andrew Schorr:

Okay.  Now, can a major medical center like yours help a patient discover the financial issues related to them, maybe even work with their insurance company to see are there options for them related to being in a trial?

Mary Ellen Hand:

I think over the last couple years in particular things have become much more complicated for people.  You know, some people sign up for Medicaid or Medicare replacement policies in the different states.  There’s Medicaid with places—Medicaid policies that don’t allow people flexibility.  But certainly that’s our job is to help people find out where they could go and if they’re eligible for a trial to help them get to that trial, and some of that is people who have—fit a particular niche.

And some people need to be well enough to travel, you know, if they need to—if the trial is out of our ZIP code.  Here in Chicago we’re very collegial in head and neck cancer and lung cancer and, you know, multiple other cancers.  You know, if the trial exists five miles from here, we’ll facilitate the patients getting on that trial there.

I think that medical records, one of the many—one of the most common medical records systems is available at many institutions across the country, so people can have access to the reports for another hospital.  Otherwise, there are coordinators and people who can make sure that all of that gets to the research nurse and gets in the hands of the person who is going to take care of that.

And then at our hospital, and I’m sure across the country, we make sure that they get the imaging so that they have something to compare it to, and then that’s uploaded into your chart, you know, at the other facility so that everybody has the right information to take care of the patients.

 

Andrew Schorr:

Okay.  Dr. Aggarwal…

Dr. Aggarwal:

I would just add…

Andrew Schorr:

Go ahead, please.

Dr. Aggarwal:

I would just add that this is a very common concern about the financial responsibility for clinical trials.  And here at Penn we are actually trying to make this process very, very transparent so that when I discuss a clinical trial with a patient actually our consent forms reflect what will be the standard of care costs and what will be sponsored by the clinical trial.

And, in fact, we do facilitate meetings with a financial counselor so that if a patient has concerns about what will be covered versus what will not be covered will be discussed at length with a financial counselor.  And that actually has gone a long way in allaying some of the concerns that patients have when going on clinical trials.  So, you know, it goes hand in hand with what Mary Ellen was saying, that I think once patients hear from the oncologist that there’s another level of—from a finance person I think that really goes a long way.

And I would urge patients to actually discuss and ask the facility where they’ll be treated if there is such a person who can discuss with them, because most academic cancer centers do have this facility.

Andrew Schorr:

So many people are treated, you know, by a local oncology clinic, but often they can work in partnership with an institution like yours, Chicago, Philadelphia, others around the country.  How does that work?  How can that work where they can be in your trial but maybe some testing or some other things, or do they have to commute to your institution maybe from a distance all the time?  Let’s start with you, Dr. Aggarwal.  Can there be more partnership, or are more trials available now in the community as well?

Dr. Aggarwal:

So a lot of partnerships exist between community physicians as well as academic physicians, so I see patients for my community oncology colleagues all the time, and the goal really is to make access easier, you know, the access to clinical trials and drugs easier.  So while the administration of the drug and the monitoring of the drug may happen at the academic center, there are many tests and imaging procedures that can occur in the community.

And the goal is also to make this easier for patients.  So if a patient is 25 miles away, I try not to drag the patients here just for a clinical exam or just for a scan.  You know, so I would facilitate them getting scans closer to home with their outpatient oncologist and then ask them to perhaps bring a CD with them for review.  They can get their blood work done closer to home.

So there are lots of things and lots of procedures where we work synergistically with their community physician hand in hand to try and facilitate all of these procedures so that they don’t have to keep traveling all the time.  So we certainly do that.

Andrew Schorr:

In Chicago, too, Mary Ellen?

Mary Ellen Hand:

Certainly.  You know, there are some things that the study requires.  If an infusion needs to be done onsite, that’s what happens.  You know, we have patients who travel across the country that might have a genomic mutation.  They may be looking for second or third generations of drugs, and so those people may travel.  So they have their local oncologist, meaning near, whether that’s someone in the community or someone in the academic center.

I think that’s another thing, is that patients are concerned that their doctor, whom they’ve forged this relationship with and the nurse, they think they will be upset if they go somewhere else.  And then instead of knowing that it’s a great opportunity for us to advance the body of knowledge but it’s also—we’re always encouraging and hopeful that people can get onto a clinical trial.

And so I think it makes them feel really good that people have these connections.  I think they like to know they’ve talked, they like to know that everybody’s on the same page and this many more layers of care take care of that.

Andrew Schorr:

Pat, let’s pick up on that.  So…

Mary Ellen Hand:

Their problem, their knowledge, all of us together, so.

Andrew Schorr:

Right.  Well, Pat, let’s talk about that.  So people have a doctor, maybe the one who diagnosed them, and they have a close relationship with them, and they’re afraid of losing them.  What do you say to people?  Mary Ellen spoke about that but from your perspective.

Pat Gavin:

Well, I think it depends somewhat on the trial and where they’re going to be available.  I received all of my care through the clinical trial locally at the Lacks Cancer Center here in Grand Rapids.  It was a trial like many others that are in the national clinical trials network, and the NCI-sponsored trials are generally available at the NCORP sites, and there are a lot of those around the country.  I was fortunate to have one of the original ones here in Grand Rapids by the Cancer Research Consortium, and those trials are available in academic centers, they’re available in community cancer centers like I had.  So it depends on the trial.

Now, some of the pharma trials may be a little more isolated and localized to specific hospitals for some of their early?phase trials.  Talk to your oncologist again.

Andrew Schorr:

We are getting questions.  And so I mentioned I have chronic lymphocytic leukemia.  This came in from George, who also has CLL.  He said, I’ve had no treatment, but it’s likely that it will be needed very soon, and it seems that Medicare patients are treated somewhat unfairly when it comes to available financial assistance for oral chemo, oral drugs that are now in trials often, Mary Ellen.

And so he says, are we likely to run into problems with clinical trials if you’re on Medicare?  So, Mary Ellen, any guidance about that, Medicare patients and trials?

Mary Ellen Hand:

No.  I think that we’re an aging America, so I think that we want to be sure that patients who are on Medicare have access to clinical trials.  So I think what he’s speaking particularly to is the co?pay of some of these medications is so very high, and co?pay assistance programs are not always built to support and help them in this.  But I think that if he’s going to be eligible for a clinical trial, he should, you know, number one see if he’s eligible. And then hopefully the place that he’s at will be able to help navigate that for him so that he can be—you know, be eligible to participate in that trial.

Andrew Schorr:

Okay.  One other question, Dr. Aggarwal.  This one comes from Stacey.  Stacey also has leukemia, and we’ve had oral drugs being developed a lot now for various leukemias, this is CLL.  And so there’s a clinical trial underway combining two of these oral agents, ibrutinib (Imbruvica) and venetoclax (Venclexta), is underway at MD Anderson in Houston, and the same trial is supposed to begin at Northwestern in Chicago near where Mary Ellen is, and that’s in May.

And she says since there’s a four? to five?month period before the introduction of venetoclax following ibrutinib, what would be the chance that I could join the trial at Northwestern in May, or would this be something I would have to direct to the doctor leading the trial?  She’s wondering about since the drugs get combined but sort of one after the other, can you sort of start, and how does that work?

Dr. Aggarwal:

So I would say that each clinical trial is different in terms of how they’re designed and what eligibility criteria are outlined.  I would really encourage participation—or I would encourage her to speak with this—speak about this trial with a physician or contact the PI of the clinical trial at MD Anderson…

Andrew Schorr:

Principal investigator.

Dr. Aggarwal:

…principal investigator to try to get some clarification of that.  There are some trials that prohibit previous therapies or previous ibrutinib, for example, prior to enrolling in a combination clinical trial, and there are some trials that allow prior participation.  In some instances, they may see progression on ibrutinib prior to combination therapy that is ibrutinib and venetoclax.  So I think it’s a matter of finding what the check boxes on the trial are, and talking to the principal investigator would be the best way to go about it.

Andrew Schorr:

Okay.  Here’s a question for Pat.  So, Pat, one of the things I wonder about is there are people who are on modern therapy now like for instance some of these drugs we mentioned, people are doing well on ibrutinib or people are doing well on venetoclax, or people are doing well on some of the lung cancer drugs.  Now, none of us know how long they’ll last, so they say, well, why should I even think about trials if it’s not broken now?  What would you say to them?

Pat Gavin:

We have to as patients look at clinical trials as a form of treatment, and it should be something that should be considered right from the beginning.  I hear people saying that, well, I’m going to go with what I’ve got so far, and if that doesn’t work and nothing else is an option, then I’ll use it as a last resort.  Now, in some cases a clinical trial may be a last resort, but in other cases, like you mention, there may be things about early treatment that would disallow you from participating in a clinical trial later on, so it’s best to be talking about clinical trials as an option right from the beginning.

Andrew Schorr:

Well, you know, this is a series we’re doing, and so we’ve covered some ground today, and I just want to recap a couple of things.  We talked about the phases of trials.  We talked about financial issues, and there are counselors to help you related to that.  Pat and I told the story of each of us thinking we wouldn’t be alive if we hadn’t been in a trial.  We talked about genomics.  So we’ve covered a lot in our first one, and we have another program coming up late in June.  Dr. Aggarwal, was this a good start?

Dr. Aggarwal:

This was an excellent start.  I think we definitely look forward to more patient participation on further trials, further programs like this.

Andrew Schorr:

Okay.  And, Mary Ellen, do you think we made a good start today, and hopefully people will now consider trials?

Mary Ellen Hand:

I think that it’s always just good to have more education, so whatever venue we can give that to people, whether it’s talking one on one with their physician or nurse or whether it’s online, to give people permission that they can get more information.

I think the other important thing to know is the criteria we talked about is you can’t—if you are truly getting a second opinion, you should get it before you start something, because you don’t want to have started a treatment that you get one dose of something that blocks you from access to a clinical trial.  Or you don’t want to have your genomic testing done yet, and yet you’ve started chemotherapy.  So sometimes it’s just educating people that, you know, if they’re not very sick, there’s time to get more information.

Andrew Schorr:

Good, good point.  Pat, what’s a final comment from you?  What do we want to leave people with, hopefully have more people think about trials, get access to them and have greater participation?

Pat Gavin:

Well, every time I talk I say I’m alive today by the grace of God and the fact that I participated in a cancer clinical trial.  They make a difference.  They’re the reason why you and I are alive today.  They need our support.  If clinical research is going to advance, we have to have patients in clinical trials.

Andrew Schorr:

Right.  So if we want progress and cures for the cancers that we’re living with, we’ve got to work with folks like Mary Ellen, Dr. Aggarwal and the other folks involved in research around the world, really.

Well, I’m over here in Europe, today in Barcelona.  This is a worldwide broadcast we’re doing.  Pat Gavin, I want to thank you so much for joining us from near Grand Rapids and wish you good health, Pat.  Thank you for being with us.

Pat Gavin:

Thanks.

Andrew Schorr:

And, Mary Ellen Hand, thanks for joining us again on our programs and in Chicago and 34 years of devotion to us, Mary Ellen, you keep going.  Thank you for being with us.

Mary Ellen Hand:

You’re welcome.

Andrew Schorr:

Okay.  Dr. Charu Aggarwal from Penn Medicine, the Abramson Cancer Center in Philadelphia, thank you for being with us again on one of our programs.  And thanks for the research that you’re moving forward with and your devotion to patients with cancer.  We hope that—well, we know it makes a big difference, and we look forward to you having great discoveries in partnership with patients moving forward.

Dr. Aggarwal:

Thank you for having me.

Andrew Schorr:

Great program.  Our next program will be coming up on June 21st, and we’re going to discuss are clinical trials a gamble?  So how do you decide as a patient, you and your family?  We’ll talk about that in June.  Thank you so much for being with us.

Paying It Forward: Volunteering for Clinical Trials

Editor’s Note: This blog and video is from the Alliance for Aging Research. The Alliance for Aging Research is dedicated to accelerating the pace of scientific discoveries and their application to vastly improve the universal human experience of aging and health.

Getting medical discoveries from the research lab to patients depends on clinical trials and the people who volunteer to participate in them.   Volunteering in a trial may help society at large by bringing new treatments one step closer to patients, and could help a loved one if you have a genetic disease or condition.  Volunteering may also give you access to a cutting-edge treatment and medical team that carefully monitors your health.  But clinical trials can’t happen without volunteers, and 37% of trials don’t enroll enough patients to move forward.  Clinical trials need volunteers like you so watch this short film to find out more about why they are important, how to get involved, and what it means to participate.

Clinical Trials Awareness Week 2017

The Coalition for Clinical Trials Awareness (CCTA) is hosting its 3rd annual Clinical Trials Awareness Week on May 1 – 7, 2017. CCTA’s mission  is to advocate for the creation of a federally sponsored public awareness campaign to increase the public’s understanding of the benefits of clinical trials. and

This  week is a time to raise awareness about the importance of clinical trial participation and recognize the individuals who have made new, innovative treatments a reality for patients worldwide – clinical trial researchers and participants. By shining a spotlight on these unsung heroes, we can raise awareness about the benefits of participating in a clinical trial.

Check out some of the events happening this week:

Can Digital Media Save Clinical Trials Tweetchat?

As part of Clinical Trial Awareness Week, A Coalition for Clinical Trial Awareness (@CCTAwareness) and @patientchat will be hosting a tweetchat on May 2nd at 1:oo pm EST. We will be participating and are inviting you to join us! #patientchat #CTAW2017

New to tweetchats? – Check out this guide we created.

Clinical Trials Mythbusters – LIVE Webinar

Are clinical trials only for patients who run out of treatment options? Watch online and ask our expert panel questions as they debunk common myths around clinical trial participation. Tune in to hear the patient perspective and expert advice for making decisions about clinical trials.

Tune in to learn:

  •       What is a trial and when should I consider one?
  •       What are common clinical trial myths?
  •       If my cancer center does not offer a trial, what should I do?
  •       How can I stay informed?
  •       Is there financial assistance to be in a trial?

Watch online on Tuesday, May 2, 2017 3:00pm EST for a 30-minute virtual webinar. You’ll also have the opportunity to get your questions answered by the panel. Send questions in advance to questions@patientpower.info.

Register HERE.

Clinical Trials Mythbusters SM from Patient Empowerment Network on Vimeo.