Five takeaways from the op-ed:
1. To understand the motivations and challenges of patient-innovators, Mr. DeMonaco and Dr. von Hippel worked with colleagues internationally to conduct a nationally representative survey in six countries and to interview patient-innovator groups.
2. The authors report up to 1 million people in the six countries who said they had developed medical products for personal use. Patients were motivated by the realization that commercial industries had not yet filled a medical need.
3. Patient-innovators differed from industrial developers in three key ways: they dedicated their own time and money to developing a product, made the product freely available and let others test their design for improvements.
4. Patient innovations can sometimes have safety issues, since federal agencies cannot regulate noncommercial activity. Yet the authors say the government should support patient-innovators because the potential benefits outweigh the risks.
5. The authors expect patient innovation to play a complementary role in commercial innovation. Commercial developers cannot create a product to answer every patient’s need, so patients can fill in industry gaps with the proper support.
More articles on patient engagement:
Viewpoint: Patients have the right not to know their prognosis
Patients lack knowledge about high blood pressure: 4 things to know
12-year-old creates animal pouch to hide IV bag from young children in treatment
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