Thanks to a surprising and devastating diagnosis, I know more than most physicians about what it’s like to live with the brain cancer known as glioblastoma, everything from self-titrating my anti-epileptic medications to making sure the right ICD-10 code appears on my MRI referrals. As much as I’d rather not have this expertise, I’ve learned that it is extremely valuable for medical students, physicians, people with brain cancer, pharmaceutical companies, and others. I’ve also learned that it is undervalued.
Since I was diagnosed 20 months ago with glioblastoma — a disease I share with Sen. John McCain and about 18,000 other Americans — I’ve tried to learn all I can about the disease, its treatment, and how best to live with it. In doing that, I’ve become an expert patient, what some call an e-patient, following in the footsteps of pioneering e-Patient Dave.
I and other e-patients have a lot to offer in at least three separate areas:
Educating patients. When I was diagnosed with glioblastoma, I knew nothing about the disease. I quickly learned from others with brain cancer. Fortunately, I’m now able to “pay this forward,” having become an active and trusted advocate in the brain tumor community. I now regularly receive and respond to requests from people newly diagnosed with glioblastoma or their care partners. They seek information about treatments, about side effects and strategies to mitigate them, and more. They look to connect with someone who has “been there” and to hear a word of encouragement. I find education and encouragement walk hand-in-hand.
Educating physicians. Medical students spend an immense amount of time cultivating deep technical knowledge of physiology, pathology, pharmacology, molecular biology, anatomy, and more before selecting a specialized discipline and dedicating several additional years immersed in that domain. Missing from this educational experience is the perspective of the people they
will be in contact with every day, as well as experience communicating with people who are sick or dying. Medical school often detaches physicians-in-training from their own physicality in order to differentiate physicianhood from patienthood.
Learning from e-patients can close this gap. We know what communication strategies are effective for giving bad or terrible news. We know how to be in the presence of suffering. We have wrestled with prognoses alongside loved ones. We have submitted for prior authorization, paid out of pocket, and spent hours on hold with insurance providers. We’ve also developed vast technical knowledge about the treatment and management of our diseases.
The value proposition is straightforward: Medical schools offer physicians-in-training a glimpse of what disease looks like. Patients provide a full view, along with insight into how disease feels. Medical schools need to close the knowledge and experience gaps, but currently do a poor job incorporating patients into medical education.
Educating drug and device companies. Drug and device companies seek out e-patients to elicit informed perspectives from people who use their therapies. Patients are the end users, and they evaluate drugs and devices by their effects on quality of life, which is difficult to measure in laboratory settings or clinical trials.
Companies sometimes reimburse e-patients for allowing their profiles to be published in marketing efforts as a way to demonstrate real-world use, for speaking at industry conferences, or for taking part in focus groups. But these honoraria often fall short of industry standards because few patients receive training on either the true value of their perspectives or on how to set speaking and consulting fees. What’s more, this compensation often carries noncompete clauses and disclosure statements that preclude further opportunities for patients to be reimbursed for their time and experience.
That needs to change.
The services that e-patients provide to fellow members of their communities and the hours of volunteer time they donate to nonprofit and advocacy organizations are free and heartfelt gifts of time and expertise. In my community, we describe those affected by brain tumors to be the closest family of support that we never wanted to join. The reward I receive for giving my time is that my experience stands to benefit others. When I place a call to an elected official to advocate for more research funding or respond to an email from a person with glioblastoma, it isn’t difficult to distinguish that investment of time from the time I spend preparing and delivering a lecture to an auditorium of clinicians.
People living with disease, especially chronic or advanced illnesses, and those who have survived it are often more adept at navigating the complicated health care landscape than medical school faculty members. Patients can also offer sophisticated critiques of care delivery that improve clinical practice. That’s why I believe medical schools and teaching hospitals be more aggressive about incorporating the experiences of those receiving care. This perspective should be an integral part of medical education, and patient educators should be compensated for providing it.
By providing insights that improve the design of clinical trials and enhance patient experiences, expert patients can help drug and device companies with their bottom lines. This work should not be seen as nice-to-have volunteer work. Instead, it should be compensated, just as these companies pay physicians and researchers for their time and expertise.
This won’t happen unless patients fully realize the value of the services they provide, and band together to nudge teaching institutions and companies to acknowledge the same thing. Patients currently use moderated Twitter chats, Facebook groups, podcasts, and blogs as avenues of support for asking questions and seeking advice about treatments, side effects, and clinical trials. These connectivity platforms can also be leveraged to better organize the patient community, share best practices for acting as patient educators or consulting with industry, preparing resumes, craft talking points for how to respond when asked to teach or speak, and set speaker’s fees and consulting rates.
Don’t get me wrong. I’m not suggesting that volunteer work be eliminated in favor of compensated work. Nonprofit organizations thrive because of the time given by their volunteers. Donor dollars go further when engaged volunteers supplement administrative costs and staff.
But medical education and industry should recognize patient contributions through fair compensation, commensurate with the work performed. If a patient delivers a service that a professional might otherwise provide, the patient is entitled to similar compensation.
Expert patients offer value when it comes to medical education or the development of medical devices and drugs. It’s time for them to get the compensation they deserve for improving the health care experience for everyone.
Adam Hayden lives with his family in Indianapolis. He blogs about living with brain cancer on Glioblastology, frequently lectures at medical schools, is an advocate for and member of the patient advisory committee for the National Brain Tumor Society, and serves on the executive board for OurBrainBank, a patient-driven platform to help people with glioblastoma better manage their diseases.
Please add to your blog site. Diagnosed with Glio 6 mo ago. Treatment by Duke with craniotomy + Temodar + 6 weeks radiation. Was in Elevate Trial x 1 month. Exp right sided of loss function. The std protocol offered now is 1 yr Avastin + Temodar
I’m very much interested in getting other options, in addition
FYI I am an 63 yr Oncology RN
Thanks for your comments
Agree about working with medical schools and conferences. Even a small amount of money could mean a lot; both because it places value on the talk and because even a little money means a lot to some people. I think the principle of paying people SOMETHING for their time consistently needs to be established.
To get paid fairly, really expert e-patients need to make more than run-of-the-mill speakers. But since that’s going to involve difficult negotiations and stuff, I really think principle #1 is: pay people SOMEthing!
I suspect too that, institutionally, the biggest hurdle and obstacle is lack of a bureaucratic mechanism to pay folks like this. So getting people paid something would be a huge step.
Great article Adam. I agree completely. I think there is a special role for “expert patients” … one that recognizes the epatients that bring extra value, not just because of their experience, but also because they have taken the time to educate themselves about the system, their disease, or whatever that helps to ensure they are providing expert value … there is a role for professional “ePatients within the healthcare system.
I have a muscle ease I’ve had it for two long. I would appreciate it very much for more information about this dease I have. Some doctors call it In small letters MS. I believe that’s how it spelled. Like I’ve said I sure would appreciate it for helping find out what is the true name of the dease I have. IL be looking forward to be hearing from you as soon as possible to take care of this problem I’m having trouble with your friend Rose Dolan please do text me back..
Stop giving your services away for free. Set up a web site and offer consultations to drug companies, medical schools, other patients, etc.
If your services are really useful (and can’t be found elsewhere for less money) people will pay you for them.
Thanks for allowing me to even chat with you for years I have had a word even I can’t understand why and how I’m sure you have all the infermation
You need a LICENSE to provide medical advice. Sure one can give how to deal with InsCo advice but if the advice even comes CLOSE to treatment diagnostic or similar advice and there is even a slight resemblance of compensation then the action is considered “practicing without a license”
I even know actually licensed physicians who have gotten in trouble for doing this “charge game” without documenting a fully endorsed doctor-patient relationship including proper documentation
Thanks for sharing. Many thanks and kudos to AD and all of the other uncompensated patient advocates. Like all of you, I spend a lot of time trying to help patients because I am a patient myself. I have not done a lot with cancer patients; however, that is about to change. Patients with certain infections, neurodegenerative diseases, autism, and/or autoimmune disease are my primary focus. My areas of expertise include access to safe medicine and/or alternatives/work arounds, doctors, research, etc. Last but certainly not least, my past includes many years spent getting claims paid, and identifying and helping patients, providers and others who are harmed and/or at risk of harm from adulterated prescription drugs. One patient group that I wish I understood better and could advocate more for would be those with gout.
Health care providers and other professionals often come to me for help. Some patients are not at a place where they are ready for help/not able to help themselves. In these instances, the only thing that I might have to offer is the comfort and understanding that comes from being a patient myself. There are many forms of healing and sometimes, the best and most effective is not found in a pill or an injection. It comes from the understanding, kindness and support of those around us.
Wish that I could learn faster and help more people. Unfortunately, there is no compensation available for victims and/or those who help victims of adulterated prescription drugs. Instead, there is ceaseless financial need and the never ending threat of retaliation – hacking, wiring, and abs etc.- greed, and partisanship. These days find me bruised and battle weary. In need of help and support myself.
Like you I have an amazingly rare cancer as well. The big issue is I am also a healthcare professional. When I speak up I am held to a totally different standard then you are (unfortunately as I can’t be as vocal to help as you because of liability exposure)
THAT is the issue. My mom some 50 years ago was in your exact situation with GBM as my father was diagnosed with it and was one of the first to be treated surgically and investigatively for it. She was like you the “go-to gal for GBM LONG before the thought of the Internet or social media was ever conceptualized
I recall as a kid she would be reading journals that she would get from cooperative physicians and the like and would travel all over the nation to both advocate for it but to also seek institutions and or physicians who would step up and try to help my dad (he was a CEO of a HUGE public company back then)
She never expected a dime and never would have accepted a dime for her efforts
I have done surgery for the last 20 years (about half my career) Pro-Bono as I no longer need the income for helping others but I have to say that suggesting that the conjectural input by patients is nowhere as valuable as you think it is
YES, people at the pinnacle of their efforts like YOU are valued and could/should be compensated for the time placed but honestly, the majority of patients who are trying to advocate for their particular disease are FAR too emotional to be of value in the bigger scope of things. Compensation could come from charity foundations supported by the people with the disease or thru donations by entities that have attachments to the concern NOT from universities or the like.
When I am asked to speak to Congress or to the Senators that I am on speed dial from they know I am laser focused and have NO attachment to the disease only to the process
I realize that in the scope of things your GMB and my NET cancer is less than a fly on a beach. YES, it sucks we are sick and worse that we will die from our disease but should we shift money away from say breast or lung cancer to devote to our orphan disease when if anyone hits on a solution for say colon or lung or cervical it will trickle down to us as well. Focusing on the rare is FAR less likely to gravitate up to help the more prevalent diseases
What really bothers me the most is the division of funds into small baskets so that no one basket then has enough to really make a difference.
Sure you want your slice of the personal pie but that means that the money has to come from somewhere and that means more costly healthcare in general unless you get yours from donations
I devote EASILY 30 hours per week fielding one on one and group advice on both my cancer as well as cancer in general and I advise to 12 PharmaCos and about 100 Congressional members on a given week
I do it all for free as do LOTS of other patient/professionals.
I can EASILY ask and get paid for my input as well as about 30 other docs who donate their time but we don’t
Adding income to the mix undermines our credibility and dilutes the effectiveness of our bark (or as my wife calls it my roar)
When I call a PharmaCo exec or US Senator they are ready to listen because they know I have helped them when they needed me and my colleagues and they know at some point it will be pay back time and now is that time
I suggest you look to instead of being seen as sick cancer patient who happens to type well and knows how to get the masses engaged shift to being a source of power that they need rather than have to deal with
Dr.Dave, I am totally agreed with you.
Agreed. I have met patients who turn their expertise into a new career, such as cancer coach. Legions of patients now go online not only to learn about and read journal articles about their condition and treatment options, but to share experiences, recommend physicians for consults, tests to consider, and treatment options. Some also advocate with FDA to withdraw harmful devices and drugs from the market. This is a huge pro bono effort.
When you have cancer or a chronic disease that medicine hasn’t ‘solved’ yet, there is a motivation to reach beyond current guidelines, and look outside the box. And at neglected areas in medicine that are hiding in plain sight – such as dental impacts on the microbiome, immune and neurological systems – because dentistry has been kept separate, and dental records are not commonly in physicians’ EMRs. There is so much in the form of new discoveries, and innovative approaches. I wish the media were more interested in cutting edge approaches. It would accelerate the pace of research, and help patients and physicians who treat them.
Your insight blows me away. Those of us who have been through the cancer ordeal have so much to offer to other patients and all medical professionals but no real platform to express the expertise we have gained dealing with all aspects of the disease. The most difficult thing during my 5 year experience has been trying to navigate through the process with really no one who has been there to help and provide advice. I wish I had had someone like you to talk to with your insight and knowledge when I had the many difficult decisions to make during treatment and the aftermath. What you have to offer should definitely be open to compensation just like any other service.
Perhaps, this is just common sense…
But at the present time, the only way that I could see that expert patients be paid is if their memoir does well in publishing…without being the 10th “story of my life with X” type…
Perhaps starting with paid participation in conferences as one of the expert speakers???
Payment for people who help spread information about their condition should be compensated. Answering questions on social media, I pass along my experiences with depression, social anxiety and agoraphobia. But I always recommend seeing a good doctor.
I’m not the expert, but I am making a big contribution. Knowledge is power! And money talks.
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