I recently read an interesting white paper published by the Harvard Business School from which I stole the title of my blog (really, I adapted it…some of the words have been changed to protect the relevance of the paper to this story).[1]  I can’t exactly recall where I came across this white paper, but the topic appeared immediately relevant to patient experience, even though the authors had no intention of applying their theoretical musings to the patient community. Instead, I will do it for them.

The white paper is 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. It’s an interesting read in and of itself, but if you replace all the instances of “user communities” with “patient communities” and “artifact” with “medical product” you suddenly have a theoretical model for how patient communities are uniquely positioned to contribute to medical product strategy with only a few notable exceptions.

The authors note that sharing information among communities can serve as a source of ideas for firms who often seek to collaborate with communities to innovate.  If we put this in the patient context, patient groups made up of experts in a certain disease area can contribute unique perspective and ideas to medical product “firms” committed to patient engagement.  This engagement requires collaborating with patient communities to learn from their experience early in, and throughout, the total product life-cycle. In Shah and Nagle’s model, individual patients are “non-firm actors” who contribute, often because of their own intrinsic motivation, to the development of novel medical treatments. 

One of the problems applying Shah and Nagle’s model to patients is that patients cannot alter the “artifact”.  In other words, patients typically can’t alter a drug or device to make it work better for them.  There are amazing instances where this does happen (see this story about the lady who created her own personal artificial pancreas).  But, in general, this lack of ability to alter the drug or device is a real, and frustrating, barrier to patient communities.  The only impact they can have is by means of advocacy and engagement.  Therefore, the burden is on the medical product industry to be the “artifact modifiers” on behalf of patients.  To do this, industry must find ways to include patient experience in their strategic decision-making.

Like the issue above, Shah and Nagle note that transparency between the community and firm is necessary for the collaborative relationship to work.  There is no doubt that increased transparency between medical product sponsors and patients would be of mutual benefit. However, there are limits to this given the proprietary and highly competitive nature of medical product development.  That said, authentic patient-industry relationships must achieve some level of trust and transparency for patients to feel their contributions are valued.

Finally, Shah and Nagle note that there are typically low costs associated with their more technology-focused user communities.  This may be true for patient communities too, but the outcomes for poorly funded patient groups have a greater negative impact.  Though no less motivated (and often more motivated), smaller patient groups do not have the resources to engage with industry, government, or regulators to the same extent that larger, more well-funded patient groups do.  Larger patient organizations may be able to offer their patients education about medical product development that contributes to greater strategic contributions from those patient communities to industry.  Cost, organizational sophistication, or lack of product development knowledge should not prevent industry from meaningfully engaging with patients to understand their experience.  There is still value from hearing the real-life experience of patients living with a condition.  It’s been said but is worth repeating – patients know their bodies and their disease better than anyone else.  We need to find ways to listen and leverage that information into innovative treatments.

The ability of industry to engage with patients is the critical component to this community-strategy arrangement.  Shah and Nagle’s model provides a glimpse at how effective community-firm relationships can be.  However, the model does not account for the very real and considerable barriers faced by the medical product industry when it comes to fully engaging with patient communities.  Until safe harbors for anti-kickback and advertising and promotion regulations exist, we will continue to see stunted relationships between patient communities and industry.  Patient experience should be a mandatory component to medical product strategy. The rewards for enhancing these collaborations could be immeasurable.

[1] Shah SK and Nagle F.  Why Do User Communities Matter for Strategy? Working Paper 19-126. Harvard Business School. 2019.