This post summarizes a recent article published in MIT, Sloan Management Review. Find the full article here

The last time we posted, we discussed the concept of patient-initiated research and the “N of 1” approach. Since then, we conducted surveys in 10 countries to learn about all types of consumer-driven product innovations, including those in the medical field. Next, we did more studies to learn about medical-product innovation development, in particular. The studies, including surveys and face-to-face discussions with groups of patient innovators, allowed us to deeply understand key issues. These issues include the strong desire of medical patient innovation groups to find ways to design and ethically conduct clinical trials to test their innovations.

Members of patient communities, like MyApnea, have a long-standing tradition of sharing useful information that may be of value to others. They do this in response to questions and share new hacks that they have found useful. There is now growing evidence that patient communities are beginning to document their hacks in an organized way. In doing so, they are converting anecdote into data. And, from data comes knowledge.

We have highlighted the activities of two such patient communities: OpenAPS and Crohnology. Members of both communities have agreed to share their common experiences with each other in a formalized way (N of 1) and have agreed to aggregate their experiences (Aggregated N of 1). The number of people participating in the collection of data is striking, in some cases, numbering in the thousands.

Importantly, the phenomenon of patient-initiated research does not exclude the collaborative research approach exemplified in the MyApnea community. Clinical researchers can get valuable insights into the issues that are important to patients and include them in their formal studies. Paraphrasing our concluding paragraph, “As the free patient innovation system expands and strengthens over time, we expect to see greater complementarity…..Patients, medical product and service providers, and government regulators all have vital roles to play in supporting the free patient innovation system and helping it develop in medically and socially valuable directions. The economic reality is that commercial producers and medical service providers will never be able to deliver everything patients need. Innovative patients can fill many of the gaps if they are properly supported. A richer set of medical innovation options will benefit patients, commercial, medical caregivers, producers and society at large.”

We hope that you enjoy reading the full article and welcome your feedback.
For the complete article, CLICK HERE.

Authors: HealthHackingWithNof1 (Harold DeMonaco, Pedro Oliveira, Andrew Torrance, Christiana von Hippel, and Eric von Hippel)

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