Stream: patient empowerment
Topic: Articles about patient innovators
Dave deBronkart (Jun 28 2019 at 13:21):
There is probably a better place for this but I'll start it here, for reference in the patients at DevDays thread.
Note: not all "Superpatient" innovators would be users of FHIR data - the aspect I discuss here is the social change, enabled by all forms of tech. Social resistance and skepticism will be a factor in the success of our advocacy so it's useful to have plenty of evidence that skeptics are wrong.:-)
von Hippel "When Patients Become Innovators"
This is von Hippel's Sloan Management Review article, featuring Dana Lewis and Crohn's patient/innovator Sean Ahrens. Importantly for some business readers, it includes a graphic from his book Free Innovation that explains the significant difference in motivation and process when patients are driving the process. (Actually, von Hippel asserts that patients are a special case of the general category of consumer home innovations.)
BMJ "When Patients Innovate" (March 2019)
Describes Tal Golesworthy, inventor of a surgery that radically improves life for Marfan Syndrome patients. Numerous other names, some familiar to me, some new. Look at the range of conditions!
- insomnia - online CBT
- juvenile RA - violinist invents hand exercise device
- thermal bra for mastectomy / reconstruction patients
- medication adherence (evidently more than just a reminder app)
Patient-Innovation.com
The BMJ piece includes this:
The Patient Innovation website (https://patient-innovation.com) is a non-profit platform for patients and carers to share solutions to cope with their diseases, jointly led by Pedro Oliveira, a professor at Copenhagen Business School, and Helena Canhão, a professor at NOVA Medical School in Lisbon.
@Rien Wertheim, it sounds like Oliveira and Canhão might be speaker candidates as well?
The BMJ article also cites the NHS Innovation Accelerator as having supported some patient innovations.
Dave deBronkart (Jun 28 2019 at 13:26):
The BMJ article ends with this boxed advice, worth noting, though again it's cultural, not specific to FHIR:
Advice for doctors from patient innovators
- Don’t assume your profession has a monopoly on medical knowledge and solutions for diseases. Open your mind
- Consider the downsides to the existing therapy that is being questioned and revised by the patient innovator, and exercise a little vision and imagination
- Work towards a logical plan that assesses the technical and medical problems in sequence: don’t try to approach and solve all the questions at once
- If there is a real unmet need for this innovation then become its champion inside your trust. Without that, it is hard to scale
- The natural instinct is to say no because it requires extra time and effort to start a project. Saying yes and then being engaged is key. Doctors have to be willing to partner patients
Important distinction: this advice seems oriented toward a goal of product commercialization, in distinct contrast with von Hippel discussing free innovation developed just for its own end-user value and often given away.
Last updated: Apr 12 2022 at 19:14 UTC
