How to Save Your Life in a Complex Health Care System

Health care systems are complex and overburdened. This is not unique to certain developed or developing countries – it’s a global challenge. Being able to provide optimal health care at a cost-effective price, without doing harm, is a daunting task for any country, government or organization.

This is not only because of the complexity of health care systems and the human bodies they interact with, but because we are dealing with human lives.

I came face-to-face with the challenge of complex health care systems when I was diagnosed with a non-malignant brain tumor.

I was no longer a ‘routine patient’. I had multiple specialists, multiple appointments and multiple medications. Life and health care became far more complex. Feelings of uncertainty, powerlessness and being afraid were very real.

As a manager at work who dealt with multiple projects, timelines and teams, my immediate response was to look at my health care as a manager. I knew that teams became effective with good management – surely the same could be true for my health care?

I came up with a simple approach to help me navigate the complex waters of the health care system. I called it my T.E.A.M Approach (Track, Educate, Ask, Manage). My family, support group, and doctors were a critical part of this T.E.A.M. Having an ‘approach’ to help me manage my diagnosis, made me feel less powerless, afraid and uncertain.

I never realized the true importance of being an activated patient and having a T.E.A.M Approach until it saved my life – when I was misdiagnosed.

It dawned on me how simple actions by patients and care partners might save a life. I wanted to share this message so it might help other patients, care partners and health care professionals – connect, communicate and collaborate – in our complex health care systems. Over the past decade, there has definitely been a shift from passive to activated patients as patients and health care professionals recognize the benefits. In general, activated patients have better clinical outcomes, better patient experiences, tend to seek preventative care sooner and have lower costs.

This inspired me to speak at TEDx on How to Save your Life in a Complex Health Care System and write a book: ACTIVATE – How to Save your Life in a Complex Health Care System.

My book discusses the challenges faced within health care systems and how patients can be more proactive participants in their health care management. It’s a quick reference guide for patients, care partners and health care professionals looking for guidance and solutions on how to put one’s health in one’s own hands and collaborate with health care teams.

If you are inspired to learn more and help spread this important message, ACTIVATE will be available for FREE on Amazon for 5 days only from 26 – 30 April 2018. Click here.

Put your health in your own hands – you might save a life – yours or someone you love.


Read more about Claire and her story here.

Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

If you are using social media to find and share health information, chances are high you are already using hashtags. Hashtags, a way for users to easily find similar themed content, are used regularly by millions of social media users, especially on the micro-blogging site Twitter. Chris Messina, a social technology expert, is credited with first proposing the use of the hash/pound character (#) on Twitter in 2007.

Although nowadays we think of hashtags as being intrinsic to the Twitter experience, Messina’s suggestion was not immediately adopted by Twitter (co-founder Evan Williams thought that hashtags were too nerdy to go mainstream). The practice of using hashtags only took off after they were widely used in tweets relating to the 2007 San Diego forest fires in Southern California. Since then, because of its widespread use the word “hashtag” was added to the Oxford English Dictionary in 2014.

Recently I got to wondering if we have become so used to hashtags we no longer fully appreciate their value. So I am going to dedicate this month’s blog to deepening our understanding of hashtags and their role in healthcare. Read on to learn how to find,  create and use health-related hashtags to boost your patient advocacy.

Why, Where and How to Use Hashtags in Healthcare

Hashtags tie public conversations from different users into a single stream, allowing you to connect more easily with existing conversations and discover new people who are tweeting about the healthcare topics you are interested in. If you are running a social media campaign, hashtags allow you to measure the level of interest, sentiment (“positive” “negative” or “neutral” attitudes), key demographics and influencers of your campaign. You can then use these findings to plan future campaigns.

What began on Twitter has now spread with varying degrees of success to Facebook, Pinterest, Instagram, Google+ and LinkedIn (LinkedIn has recently started to experiment again with hashtags).

Hashtags on Twitter

Hashtags are a powerful way to maintain your visibility on Twitter and boost engagement with your followers.  According to Twitter’s own research tweets with hashtags show a 100 percent increase in engagement (clicks, retweets, likes and replies). Hashtags can also expand the reach of your message beyond just those who follow you to help you grow your network.

Two Ways to Use Hashtags on Twitter

(1) Twitter Chats. Hashtags are an integral part of Twitter chats (live Q&A sessions organized around one unique hashtag) allowing you to follow the discussion and participate in real-time.

(2) Live Conference Reporting. Hashtags are useful when it comes to sharing insights from conferences and events. Nowadays, most organizers will designate a specific conference hashtag. By tagging your tweets with this hashtag you can expand the reach of the conference beyond the physical confines of the event.

#TwitterTip: #Don’tGo #HashtagCrazy on #Twitter. Too many hashtags can diminish your chances of engagement with a tweet.  The basic rule of thumb on Twitter is to use 1-3 hashtags within the messaging of your post. More than that and the post tends to become cluttered, hard to read and might be seen as “spammy.” The key is to use hashtags sparingly and only when they add value.

Hashtags on Instagram

Instagram is another hotspot for hashtags and unlike Twitter where less is more when it comes to using hashtags, interactions are highest on Instagram posts with 11+ hashtags. You can follow hashtags on Instagram to stay connected with interests, hobbies and communities you care about.

Hashtags on Facebook

When it comes to using hashtags on Facebook it appears to have little to no positive effect on reach. In fact, research from EdgeRank Checker found posts without hashtags outperform those with hashtags. Although some more recent research has disagreed with these findings, it still appears to be the case that hashtags on Facebook don’t make much impact.

Hashtags on Google+

On Google+, your posts are given hashtags automatically based on their content, but you can edit them or add your own. You can also search for information using a specific hashtag on Google.

Hashtags on Pinterest

On Pinterest when you add hashtags to the description for a new Pin, site users can then visit a feed of all the Pins that share that hashtag.

Five Ways to Find Health Related Conversations Using Hashtags

When it comes to searching for health related conversations, I find Twitter is the most dynamic social platform and hashtags are particularly useful.

(1) If you already know the hashtag, a simple search on Twitter (using the search box in the top right-hand corner of your screen) will bring up all conversations tagged with the relevant hashtag. You could also use a third-party tool like HashtagDictionary, Hashtags.org or Hashtagify.me.

(2) If you use Twitter’s Advanced Search option, you can narrow down your search further using parameters such as location and date range.  This will bring up all tweets tagged with the hashtag in real-time, alongside a list of Twitter influencers using this hashtag, and all photos and videos tagged with the hashtag.

(3) You can search for popular hashtags in the trending topics column on the left-hand side of your Twitter homescreen. This will also show you if accounts you follow are tweeting about the trending topics (by default, Twitter tailors these trending topics to you based on your location and whom you follow).

(4) Make a list of those healthcare influencers and organizations you follow on Twitter and plug their names into a tool like Twitalyzer. It will show you which hashtags they most commonly use.  You can then use Hashtagify.me to expand your search for related hashtags.

(5) If you are searching for a hashtag related to a specific healthcare condition, you will find a comprehensive list at Symplur.com.

How to Create a New Hashtag

If you cannot find a hashtag related to your topic, you might consider creating your own. Before you do, consider your objectives. Does the world need another hashtag?  Ask yourself: Why this hashtag? Why now? Will other users gain value from it?

Tips for Creating a New Hashtag

  • Use short, easy-to-remember keywords.
  • Stick to one word and don’t include spaces or punctuation.
  • Use a tool like org to check if your chosen hashtag is already in use for a different purpose. You should also monitor your hashtag on a regular basis to see if someone else is using it for something unrelated.
  • Use proper capitalization, numbers and clear descriptive terms that will let people know what your hashtag is about just by looking at the title.
  • Register your hashtag for free with Symplur’s Healthcare Hashtag Project. Provide a clear and short description of the hashtag when you register it.
  • Include your hashtag in your tweets at least a few times daily to get it known.
  • Ask your followers to retweet using the hashtag.
  • Use the hashtag on multiple social media channels. This gives your hashtag more exposure and helps people to remember it when they see it multiple times on different channels.

How to Track and Analyze Hashtag Engagement

It’s a good idea to keep an eye on how your hashtags are performing over time. There are a number of hashtag analysis tools to help you. Most will allow you to try out a limited search for free, but for more detailed results, you will need to sign up to use the paid features. Here are some free tools for you to try straight away.

  • Twitonomy gives you detailed and visual analytics on keywords and hashtags, top related hashtags, and a list of the most influential users. It also allows you to track the evolution of a particular hashtag over time.
  • Social Mention is a free real time social media search and analysis tool.
  • RiteTag helps ensure that the tags you use are well-chosen by showing you how good, great, or overused a particular hashtag is.
  • Tweetreach tracks the reach of your tweets – that is the total number of estimated unique Twitter users that your tweets are delivered to.
  • Keyhole Simply type in the hashtag you’d like to track and KeyHole will show you an in-depth report of that particular search.

To Wrap Up

Hashtags are a useful tool to add to your social media toolkit. When used properly, they will get your posts seen by more people, provide context by aggregating posts in real time, and provide an archive of posts to educate and inform your healthcare community.  Using hashtags strategically is a great way to connect with others, increase your visibility and boost engagement.   As with most social media tools, they work best when they are part of a bigger conversation; so take some time to determine how you can best use them to advance your advocacy.

Changing the Caregivers’ Refrain

I’ve spent the past two years since my Mom’s death wondering if I could have — no, I’ll be totally honest with you — wondering if I should have done more. If only I had looked into clinical trials while she still met the inclusion criteria. If only I had sought out and demanded that she see an expert sooner. If only I had been more patient, more present, more supportive. All of this because no matter how much you give of yourself as a caregiver, you’re always left feeling like you could, no, should have done more. Guilt, fear, exhaustion and stress are the refrain we caregivers hear, on continuous repeat, in our heads.

But what if we could change this? What if we, collectively as a community, could provide the support and encouragement that caregivers need? What if we worked together to change the refrain they (we) hear to something more positive?

My Mom, Shirley, was diagnosed with Inclusion Body Myositis (IBM) in 2008.  IBM is a relatively rare inflammatory muscle disease characterized by progressive muscle weakness and wasting. Her diagnosis came after years of our family telling her that the weakness she felt and her frequent falls could easily be solved if she just exercised more often.

Towards the end of her life she was unable to leave the house or even get out of bed. Her muscles had wasted to a point that she couldn’t move her arms or legs. She couldn’t even swallow. My Dad and I took care of her at home until she was admitted to hospice and died shortly thereafter.

The Family Caregiver Alliance reports that 34.2 million Americans have or are providing (unpaid/family) care to an adult aged 50 years or older[1].  48 percent of caregivers are between the ages of 18-49. This means that most caregivers are starting or already have families of their own to care for, careers to build and tend to, and other commitments beyond their role of caregiver.

Being a caregiver was hard. Literally, the hardest thing I’ve ever done. But looking back on it, I realize just how lucky I was. I had a committed co-caregiver in my Dad. I have an incredibly supportive husband who, without hesitation, agreed to move closer to my parents.  I also have a great support system of friends and colleagues. Not all caregivers are as lucky. Caregivers report feelings of isolation, chronic stress, depression and symptoms of declining health. Many caregivers have no one to turn to for support and encouragement. They have no one to “cover” for them when they need a break.  No one to talk to when they feel that they just can’t continue on another day.

This is why my organization, Patient Empowerment Network, is trying to grow the Empowered Patient Facebook Group. We want it to be a safe, supportive place where patients and caregivers can find the help they need, even if it’s just to swap stories or learn a new “caregiver hack” to make life a little easier. We want to work with you and for you to build a community of empowered patients and caregivers.

A dear friend once told me that we do the best we can in the moment we’re in. Maybe that’s a cop out but, having been a caregiver, I believe it’s true. The trick is reminding ourselves and each other that it’s true. I encourage you to use this community to help share that reminder and, hopefully, change the caregivers’ refrain.


[1] [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]

Financial Empowerment for Cancer Patients

The Kaiser Center reports that one-third of Americans aged 18-64 years are put into debt because of cancer. The debt is caused as a direct or indirect result of high medical costs, an inability to work and loss of income. More than half of those incurred debts of at least $10,000. The risk of debt or bankruptcy is further exacerbated among younger patients and those with lower incomes. The National Cancer Institute estimates that there are 454.8 new cancer cases per 100,000 men and women each year. Now, more than ever, is financial preparedness a key strategy to battle the disease. Financial healthcare empowerment is going to play a significant role in the fight against cancer. If survival rates are going to improve, it is imperative that everyone is prepared from day one to deal with a shocking news that will affect all fronts of your life from physical and mental to psychological and financial implications.

Preparing for the High Cost of Care

Healthcare, in general, is a costly affair especially if you don’t have a good insurance. In this regard, it is important to squirrel money away even if it is only a small amount. If you are not familiar with the 50-30-20 (regular expenses, wants and savings) rule, you might need to think about it and adopt this strategy to maximize savings that you could put away. Even simple lifestyle changes (strict budgeting and ditching credit cards) already bring you a step closer towards financial independence.

Coping with Financial Stress

Unfortunately, while you are steadily creating your personal wealth, the devastating news of cancer can quickly knock you a few notches down. Resiliency to financial stress is key in getting through the illness. This means smarter management of assets and finding ways to get help for your treatments.Seeking the services of a financial counselor or social worker upon diagnosis is imperative to check out what resources are available to you.

Better Cancer Treatment Options but Rising Healthcare Costs

The good news is that treatment options for cancer are getting better as the years passed. The bad news is that these therapies are pricey and are likely to eat up the budgets of cancer patients. Although it might be difficult to come to terms with your diagnosis, it is important that you start researching treatment options immediately. Your healthcare insurance might not be enough to pay for treatment.

Dealing with Healthcare Finances, Loss of Income and Even Bankruptcy

There are several state and federal programs that offer financial support to individuals and families. Known as entitlements, they are directed at low-income groups, the elderly and disabled persons.Pharmaceutical patient assistance programs also exist to help with reimbursements, referrals for co-pay relief programs and discounted/free medications. You can also participate in paid clinical trials to help defray costs of treatments. Cancer organizations and general organizations can support treatment plans for patients.

Cancer is a devastating disease that has serious financial repercussions. It can cause physical and emotional stress as treatments and therapies can literally cost a fortune that in turn may in debt you or at worse, lead to bankruptcy. Being prepared financially for any disaster can mitigate these negative effects and taking charge of money matters is empowering.

Spotlight on National Minority Health Month

April is National Minority Health Month. Supported by Congress with a resolution in 2002, National Minority Health Month is meant to bring awareness to the disparities in health and healthcare among minorities. Led by the Health and Human Services Office of Minority Health, efforts are made to understand the disparities and the reasons they occur. The 2018 theme, Partnering for Health Equity, encourages organizations to come together to find solutions that will help equalize health for all races and ethnicities. More information and resources for National Minority Health Month can be found here.

Evidence of disparities in minority health exists in all major illnesses and diseases, including heart disease and diabetes. However, the disparities, compiled by aetna.com, related to cancers, clearly emphasize the impact on people’s lives. In the United States, African Americans have the highest death rate and shortest survival time of any other group of cancer patients. Cancer is the leading cause of death for Asian Americans and Pacific Islanders. Heart disease is the leading cause of death for all other groups. According to cancer.gov, African American women have a higher incidence of aggressive breast cancer. American Indian and Alaskan Natives have higher rates of kidney cancer. Hispanic and African American women have higher rates of cervical cancer and die from it more often. More disparities can be found here and here.

There are a number of reasons believed to be involved in causing the disparities in minority health. They range from socio-economic status and environment to lack of scientific data about minority groups which results in disparities even in some of the most common healthcare screenings. For example, consumer.healthday.com reports, the guidelines that determine when women of average risk should begin screenings for breast cancer come mainly from the data gathered on white women. However, researchers discovered that those guidelines could delay detection in minority women, who tend to develop the disease at earlier ages. More about the study, which emphasizes the importance of understanding how cancer occurs in people of all ethnicities, can be found here.

Another reason for the existence of disparities could be biological. Researchers are looking into the occurrence of prostate cancer in African American men, who not only have a higher risk of developing prostate cancer, but they develop it at a younger age and tend to develop a more aggressive form of the disease. According to the U.S. Department of Health and Human Services National Institute on Minority Health and Health Disparities website, nimhd.nih.gov, researchers are studying why African American men are more at risk for prostate cancer and what can be done about it. Genetic makeup, access to healthcare, and environment are all being considered as factors. One study discovered that African American men and white men have a difference in the biomarkers that predict the aggressiveness of a prostate tumor. The study results are being tested further and expanded to look at other more factors and other biomarkers. More about the study can be found here.

There is much more to be learned about the disparities in minority health, why they exist, and how to prevent them. Increased attention and the increasing awareness of National Minority Health Month spotlights the need to eliminate the inequities in health for all races and ethnicities, which will empower us all.


Related Reading:

US Health Care & Medical Debt Statistics

Uber Health and Five More Groundbreaking Ideas Changing Healthcare Delivery

Healthcare in the U.S. is an industry that’s ripe for innovation. From a convoluted insurance system to a complicated chain of care to a lack of price transparency, many factors combine to create a healthcare system that’s slow, expensive, inefficient, and difficult to navigate.

But some companies are fast at work addressing the many pain points of patient care. Whether they’re small startups or large companies we already know, there are plenty of businesses out there working to make a difference in the healthcare space. Below, we’ve rounded up six ideas that are changing how healthcare is delivered today.

Uber Health

Every year, 3.6 million Americans miss doctor appointments due to a lack of reliable transportation, contributing to a high rate of no-shows, reaching as much as 30 percent nationwide. At the beginning of March, troubled ride-share company Uber announced the launch of Uber Health, a new initiative that partners with healthcare organizations to provide reliable transportation to patients in need. Here’s how it works: a coordinator schedules the Uber ride on behalf of the patient, and the patient communicates with the driver via text or call to facilitate the logistics.

The HIPAA-compliant system helps reduce appointment cancellations and saves the healthcare organizations money (as compared to using taxis or other transportation options). “Uber has helped us drastically reduce appointment cancellations. It’s great to be able to quickly request a ride with so that in-need patients can make an appointment they’d otherwise miss,” said Pete Celano, Director of Consumer Health Initiatives at MedStar Health, in the release announcing the nationwide launch of Uber Health.

Zocdoc Insurance Checker

Insurance is notoriously cryptic and confusing, and health insurance is even more difficult to decipher than other kinds of policies. How do you know what your health insurance will cover and what it won’t? Can you be 100 percent certain that a new doctor is in your network? To answer these questions, the online medical scheduling platform Zocdoc launched their Insurance Checker at the very end of last year. Patients take a picture of their insurance card, then Zocdoc extracts the important data and determines whether or not a doctor is in-network under the patient’s plan. This makes it easier for the patient to schedule visits and cuts down on surprise out-of-network charges.

Nomad Health

Have you ever been sick, only to discover that the earliest available appointment at your primary care physician’s office is in two weeks? Instead of waiting, you can call up a doctor, speak to one within a few minutes, and get a diagnosis and even a prescription, all without leaving the comfort of your home. While telemedicine has been around in some form or fashion for years (early leader Teladoc was founded in 2002), startups have recently jumped into the telemedicine space, hoping to provide a new twist on the concept of a virtual doctor visit.

The startup Nomad Health seeks to combine this telemedicine idea with the gig economy, allowing doctors to contract for virtual freelance via videoconferencing appointments. The service also includes postings for full-time positions, as well as travel nurse positions. Like employees in other industries, medical professionals are seeking more flexible and remote work schedules, and Nomad Health hopes to seamlessly connect them with these very opportunities while providing convenient video appointments for patients.

Osso VR

For decades, cadaver dissections have been the primary way of training surgical residents. But a host of new companies are using virtual reality (VR) technology to train future healthcare providers in a variety of situations. Osso VR, a startup that closed $2 million in funding last year, uses realistic simulations to teach orthopedic surgeons new techniques. Unlike cadavers, which often can only be used once, surgeons can practice VR simulations over and over again until they achieve proficiency.

Not only does VR make it cheaper to train surgeons, it also means that patients are being operated on by more experienced residents who have performed dozens of simulations (rather than just a handful). “In med school, they say ‘see one [surgery], do one, teach one’…but the truth is you need to do 50 to 100 cases for proficiency,” Justin Barad, Osso VR CEO and Founder, told Forbes.

Google’s Launchpad Studios

Google’s new Launchpad Studios program matches machine learning startups with Silicon Valley experts — and the inaugural class of seven startups all focus on addressing healthcare and biotech problems using artificial intelligence. American and international startups Augmedix, Cytovale, Nanowear, Owkin, Portal Telemedicina, Byteflies, and BrainQ joined the effort.

Each startup seeks to use machine learning in a slightly different context; for example, BrainQ identifies brain wave patterns in patients after neurological disorders to help aid in treatment, while Nanowear uses nanosensors in smart textiles to gather patient data and improve diagnostics. Google plans to establish other tracks for Launchpad Studios, but the fact that the company chose healthcare and biotech to be the first one indicates that Google is prioritizing healthcare innovation.

Forward

The year is 2030. You check in at your doctor’s office, and before you enter an exam room, you get a full body scan, and its data is fed to an AI algorithm that can spot patterns that might indicate health problems. By the time you make it to the exam room, your doctor has your data queued up, ready to review it with you and compare it to your genetic testing results. Before you leave, you’re given a wearable that will continuously relay health data back to your provider.

Sound futuristic? This process is already happening at Forward, a new kind of doctor’s office that has locations in Los Angeles and San Francisco. Not every doctor’s appointment can be done virtually through telemedicine, and Forward wants to make sure that when you do go to visit your doctor in person, the experience is seamless and digitally integrated.

The Future of Health

These concepts are just a sampling of the many new startups and innovations in the healthcare space. The future of healthcare is bright, primarily because these thinkers are funneling their efforts into problem-solving solutions that make the healthcare system smarter, more user-friendly and more well-connected.

MPN Patient Story: Ruth Gerwin

My journey began in 1999 when I was diagnosed with Essential Thrombocythemia (ET). All I took was a baby aspirin, even then they [platelets] soared to over 1 million.

In November 2004, I had a bad cold and had this aching on my left side. It was discovered my spleen was enlarged and I had a bone marrow biopsy. I was at that time diagnosed with Myelofibrosis (MF). I went to see Dr. Richard Silver in New York and he put me on Interferon. I saw him for 5 years and then transferred to Cleveland Clinic as my insurance company was making it harder and harder for Dr. Silver to be paid. There I was under the very capable care of  Dr. Ramon Tui. It was under his care that I did a trial for Jakafi. It only helped the spleen size for a couple of months, but it has kept some of the other side effects of the disease at bay. I still take 20 mg. twice daily. Also, in 2014 I had a double mastectomy.

In the spring of 2017, I was so horribly uncomfortable because by this time I looked 9 months pregnant with my spleen. I also had swollen legs and feet. I could hardly walk. I made a decision at that time to radiate the spleen to give me some relief. I was supposed to receive 10 treatments, but was stopped at 7 because my blood counts bottomed out. Hmg 6.0, Pl 5, WBC 0.8. I started with transfusions twice weekly of one platelet and two blood. I did this for several weeks and developed a horrible headache. I stopped the transfusions and my Dr. said to go home and call Hospice. He thought I had 2 weeks to 2 months to live. I was really sick, but as my spleen began to recover, my counts went up. By the fall of 2017, I was basically back to normal with the blood counts and, of course, out of Hospice. My family think I’m a miracle. But, the spleen, by December 2017 was becoming very uncomfortable again and I started radiation again January, 2018. This time I had 4 treatments and had to stop because of my blood dropping.

It has been suggested to me by two doctors to have my spleen removed and have a bone marrow transplant. But, I have read about this procedure and I know I wouldn’t survive as I am very sensitive to most of the medications they would have to give me. My current hematologist is looking for a trial I can do, but my bone marrow is nothing but fatty tissue. I have nothing there…not even fibrosis. I keep telling them my spleen is doing it all, but they won’t believe me. With no bone marrow tissue, I can’t do a trial. So, I don’t know what they are going to do with me. Anyone else have this problem? I’d love to hear what you are doing.

I know the Lord has a good plan for me and I just have to wait and see what it is. He is the “great physician”!  I’m just not real patient. I haven’t felt really well for a long time.

Moffitt Cancer Center

Moffitt Cancer Center has made a lasting commitment to the prevention and cure of cancer, working tirelessly in the areas of patient care, research and education to advance one step further in fighting this disease.

A Song for Raising Hope and Awareness for Pancreatic Cancer

The Voice Finalist Erin Willett Teams Up with Songwriters Elizabeth Russo and Tova Litvin To Write an Anthem of Hope and Raise One Million Dollars for Pancreatic Cancer Research

Pancreatic Cancer Action Network (PanCAN) Sets Goal to Double Survival by 2020

 Songwriters Elizabeth Russo, Erin Willett and Tova Litvin, whose lives have all been touched by pancreatic cancer in their families, have joined forces to write an original song “Hope’s Alive” and raise one million dollars this year for pancreatic cancer research.  “Hope’s Alive” is produced by Russo’s good friend Dan Whittemore. The songwriters have teamed up with the Pancreatic Cancer Action Network (PanCAN) to raise awareness, as early detection is the best way to improve outcomes for the disease.  The current five-year survival rate is 9%, but PanCAN’s goal is to double that by 2020.  100% of proceeds from sales of “Hope’s Alive” will go to PanCAN to fund cancer research.

Russo, who spearheaded the project, learned her father was diagnosed with pancreatic cancer in 2017 and is currently fighting the disease.  Russo recruited Willett (who was a finalist on the Voice and most recently transformed herself on the Biggest Loser) to co-write and sing “Hope’s Alive”.  The project was poignant for Willett, whose father sadly passed from pancreatic cancer in 2011.  “It’s all about putting my energy into something positive,” Willett said.  “I can’t control the fact that my father isn’t here, but I can control my activism and my actions via the story I tell.”  Willett, who has been advocating for pancreatic cancer research since her father passed, connected the songwriting team with PanCAN.  Russo also recruited Litvin, whose mother is a five-year survivor, and together the three women combined their efforts with PanCAN to combat the disease. 

To give “Hope’s Alive” an anthem quality, Russo knew she wanted to include a choir as part of the song.  With the help of PanCAN, Russo assembled a choir of pancreatic cancer survivors and caregivers.  The choir members are also the faces of the song’s accompanying music video.  “There are things everyone can do,” Russo said.  “Don’t feel helpless or hopeless.  We are all here, we are all going to stick together, and we are going to make a difference with this disease”. 

Watch Hope’s Alive


To learn about risk factors and early detection of pancreatic cancer, please visit www.pancan.org.

For inquiries, please contact Elizabeth Russo at Elizabeth@annearful.com

Hope’s Alive is now available for download on iTunes and all other platforms.


 

Talking to Your Oncologist About Clinical Trials

You’ve gotten a cancer diagnosis. You’ve selected an oncologist as your partner, working toward “No Evidence of Disease,” or NED (NED is every cancer patient’s very best friend). Your and your oncologist are working up a treatment plan, and you want to talk about clinical trials as part of that plan. Should you kick off that discussion, or wait until your onc brings it up?

YES, definitely bring up clinical trials yourself, if your oncologist hasn’t started that conversation. If you’re not sure how to kick off that discussion, here are some tips.

  • “Just do it.” Lace up your mental Nikes, and just ask the question. Have some resource links handy at your next oncology team visit, or start the conversation before the visit via your onc’s patient portal. Start with the information on the Patient Empowerment Network’s Health Centers and Programs hub, take a dive into gov, or check out the American Society of Clinical Oncology’s Cancer.Net trials site.
  • There’s an article in the Journal of Oncology Practice, “Identifying and Selecting a Clinical Trial for Your Practice,” that talks clinicians through the process of selecting clinical trials for their oncology practice. Reading through that can help you craft some great questions, and open a productive conversation with your treatment team about clinical trials for your cancer.
  • The National Institutes of Health has a great tip-sheet for oncologists on how to talk to their patients about clinical trials. You can use that to frame the conversation you’d like to have with your own oncologist about your clinical trial options. I’ve often found that reading articles and tip-sheets aimed at the clinical side of the equation have helped me accelerate discussions with my own clinical teams about treatment options, for cancer and for other medical conditions.

When you’re dealing with a cancer diagnosis, you want to have all your options on the table, and make the most informed decisions possible. Opening up a dialogue with your oncology team about clinical trials early in the treatment process will give you the information you need for those “most informed decisions.”

Another reason to open those discussions early is to gauge your oncologist’s response to shared decision making, and participatory medicine. If your oncologist doesn’t welcome self-advocacy on your part, it’s better to know early in the treatment process so you can shift to another, more participatory practice.

You are the focus of your cancer treatment team’s work. Lead the discussions, share your perspective, and participate fully in your treatment planning. Opening the discussing of clinical trials is a great way to get your team on your page about treatment and outcome preferences, and to unlock the power of precision medicine.

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 Power Of Fitness And Weight Loss As Self Care

A recent report by the NPR charts the rise of the $10 billion self care industry.  Far from dismissing it as flippant or purely cosmetic, it seems that there is a power to self-care which is only just emerging.  The January Empowered #patientchat focused on the importance of self-care for both patients and care partners, and many contributors highlighted health and fitness as valuable opportunities for self-care and empowerment.  So how can you empower yourself to make great health and fitness choices? And how will they benefit you?

Losing pounds, gaining results

Studies have shown that losing 5-10% of your body weight can make a real difference to your physical health, helping to protect from conditions such as heart disease, arthritis and diabetes.  It can also be a real boost to your self-esteem to start seeing results on the scales or in your jeans. Finding the motivation to stick to a plan, and seeing it pay off as you hit milestones and goals is hugely rewarding and empowering.  Fitness is a journey that no-one else can take for you; you can have cheerleaders and a full support crew, but it’s you doing the work, which is why it feels so great when you achieve. Not seeing the results you were hoping for by now? It may be that you’re making some of the common weight loss mistakes that can prevent effective and lasting weight loss.  By reading up and avoiding the pitfalls, you can get on with building a better body.

Boosting your body

Nourishing your body from within with good healthy food is one of the most meaningful forms of self-care. The USDA offers sound advice on creating a varied, nutritious plate to ensure that your body is boosted in the nutrients it needs.  Drinking plenty of water is also always a powerful tool, enabling your body to replenish and restore itself.  Put simply, taking time to feed yourself with a rainbow of fruit and vegetables, lean proteins and fiber, along with all the other food groups in moderation, will strengthen your body and boost your immune system.  There’s also evidence that the colors and textures will help your mental health too; so why wait?

There’s no doubt that obesity is bad for the body, and it already affects over a third of US adults. What’s becoming clearer though, is that taking a positive approach to weight loss, through regular exercise and healthy eating, not only improves physical health but greatly boosts mental health and well-being.  Empower yourself by embracing your health and fitness, and you may just find it to be the greatest expression of self-care possible.


Photo by Martine Jacobsen on Unsplash