It’s been a few years since I wrote in this space. That is about to change. I’m ready to un-circle the wagons and jump back in to the discussion around patient-focused policy. Join me in moving the needle toward effective policy that gets the patient voice into regulatory decision-making.
Read MorePatients are the experts about their own bodies and their disease. We now have an unprecedented recognition by regulators and industry that patient experience is valuable. I recently read an interesting white paper published by the Harvard Business School that focused on a theoretical model for how the structure of “user communities” provides a unique context within which ideas and knowledge flow to generate innovation in commercial "firms". It occurred to me that this model could be applied to the relationship between patient communities and medical product industry to ensure that patient experience is a necessary component to product development. Though not a perfect fit, I believe this model could provide some guidance for a framework within the medical product industry and patient communities have greater authentic, transparent, and effective exchange of ideas to drive medical innovation.
Read MoreA recent commentary by Peter Pitts of the CIOMS patient engagement working group warrants further discussion. He makes excellent points about the need for meaningful patient data, but highlights the institutional roadblocks and questions that linger about the benefit of patient engagement in medical product development. In reality, the roadblocks are real, and it will take sophisticated change management to overcome existing barriers to make patient engagement a ubiquitous reality in the medical products industry.
Read MoreThere are dozens of terms being used in the patient-focused policy space. I try to make sense of some of them, but a cohesive policy framework would help create consistency around how we describe patient-focused data and policy activities.
Read MorePlanet formation provides an unlikely metaphor for rigorously assessing the patient experience. When individual patient stories are objectively assembled using scientific methods, they gain weight and the ability to influence decision-makers.
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