“Patient Engagement” is the buzzword, where is the patient-driven design and innovation?

I have never been a good marketer, but I am pretty friendly and like a good conversation with like-minded people.  A motivated entrepreneur boot-strapping a new endeavor, I was pleasantly surprised by HIT and patient experience tweet chats.  There you found people openly sharing their experience within an industry that I desperately wanted an invitation into and the patients and care partners I aimed to engage publicly detailing what they wanted from said industry.


The moderators of the tweet chats always ask the participants to introduce themselves, and though it’s silly, I never know which “me” to introduce.  The best experiences I have had on Twitter have been those in which people genuinely share their life experience and a willingness to help others.  When asked what I do, I answer that I am a neuroscientist, but that seems wildly incomplete.  I am also a patient, have been since doctors identified my seizures at age 5, but I don’t spend a lot of time telling my patient story.  I’ve worked in nursing, social services, and now for a pediatric rare disease foundation, the International Foundation for CDKL5 Research.  I wear many hats, the most important being mom and wife, and each motivates me to spend time at these tweet chats hoping to learn how best to navigate healthcare innovation in a manner that will actively incorporate the insights of the lived experience of patient experts and those dedicated to caring for them throughout life’s daily obstacles.


Filling out questionnaires and surveys provides only the information/answers the company or agency thinks to ask.  Allow me to suggest that we may be asking the wrong questions from the start and most likely via the wrong format.  Don’t be afraid of an open proposal, of giving a patient or caregiver a little room to operate, not only will they provide you with the problems that need solving, I predict they’ll generate answers.


Those that have worked in long-term healthcare or cared for a loved one with a chronic illness, the home-bred makers who have improvised an in-home prototype from off-the-shelf parts, the parents who have cared for an undiagnosed child through a catastrophic genetic illness. . . these are the innovators that we don’t hear from at the healthcare conferences.  These are the voices with the fewest resources, but lived-experience so rich that they are capable of generating the most innovative healthcare tools.  Upon return from the annual HIMSS 2018 conference, Susannah Fox described rare and chronic patients and those that care for them, “They are the pioneers, hackers-the alpha geeks of healthcare.  If you follow the alpha geeks and hackers, they’ll lead you to the future,” during an interview with Atlas of Caregiving.  This is the attitude I’d love to see more industry professionals adopt.  I reveled in Kristina and Kate Sheridan’s story in which mother and daughter shared how being a patient and care partner through a difficult Lyme Disease diagnosis and onslaught of new symptoms presented constraints that fostered creativity uncovering a set of untapped innovators capable of not only building a symptom tracking tool to promote better health for themselves, but for others as well.


It will require a culture shift to ask that the current landscape of healthcare technology and resources available be positioned to enable the creative insights of patients, care partners, and healthcare professionals rather than utilized for traditional means of so-called industry disruption.  Patients know what is required to fill the gaps.  Let’s build the tools, create the networks, and initiate the services to overcome limitations for every patient population.  We’ll need to widen our scope, stop asking for feedback on the goals we have already dreamt up for our companies and instead let the patients drive the ship.  It is an ambitious request, but if we are bold enough to suggest we are going to revolutionize healthcare, how about starting with something simple?  Listen. . . meet people where they live, they have brilliant ideas, ideas that will help others.  Patients and their care partners are individuals, with different unmet needs.  That said, what motivates their ideas and their unmet needs are different and preferred incentives will differ for different individuals, but bidirectional communication is critical for an endeavor like this to be successful.  However, data analytics of patient-driven ideas will demonstrate shared problems amongst groups/disorders.  An open-access platform will allow public vetting of ideas, those that catch on will rise while the less popular ideas will settle to the bottom.  Truly patient-centric companies will pay close attention to those big problems that need solving and the tools that don’t exist but should. There will be opportunities to sponsor prize challenges to recruit the top talent pool to solve patient and caregiver problems.  Hosting “patients included” innovation competitions is a complimentary approach to generate true engagement in the innovation process.  Startup or undergraduate innovation program teams would compete to solve patient- and caregiver- submitted problems.  The judging panel would be comprised of patients and care partners.  Interested parties would also have the option of participating live from home.  Again, smart companies with good business sense will participate in, and sponsor events to learn from the patient/care partner experience creating space for their insights to drive innovation.  Let’s filter out the buzzwords and hype, and instead, question the status quo on behalf of patients, care partners, and clinicians that would prefer a product that makes life work.  We’ll provide patients, care partners, and healthcare professionals with the tools to thrive in a manner that they define as both designers and end users.

Heidi Grabenstatter, PhD