hanks 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.