I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes.
In terms of how can we empower patient to become active participants, one thing that comes to mind is lowering both the perceived and the actual barrier to entry.
Medicine as a field, medical devices, and medical therapies, have developed a cultural “caution tape” that says you have to have certain amount of letters after your name to get involved. The maker movement is breaking down these walls, as you’ve shown me, and these success stories need to continue to spread.
Building communities of patients and loved ones who are diving into participatory medicine can help open doors for others, provided those affected can find and interact with these communities. Adding physicians to these groups to help join the dialogue, along with the biomedical engineers, and the other stakeholders, to engage WITH the patients, families, and caregivers, rather than in parallel with them (as I see is happening frequently within medicine as we silo ourselves amongst other “professionals”) can only help.
Those ideas sum up into:
- Lower the barrier of entry and add community, social support, and opportunities for idea-exchange to build and spread these pockets of rare diseases
- Bring “professionals” into conversations with the patients to help all the stakeholders collaborate.
When we can give patients the chances to speak and also be heard by those also have the resources to turn these ideas and conversations into action, we can perhaps help patients not feel like their efforts to engage are futile.
In terms of the different models, I agree with you that they all have their place. The advantages of the mom and pop style non profits are that they have their ear to the ground with their own experiences and their ties to other affected families and individuals. Plus, they tend to be small, giving them the opportunity to pivot and explore the way larger organizations cannot because of the red tape and bureaucracy that often comes with the size and structure of larger academic institutions. Smaller start ups with corporate backing typically have that advantage of agility as well.