A Response: 10 Points to Make a Patient Organization Successful
I recently found myself perusing the Global Allergy and Asthma Patient Platform website. Because that is what asthma nerds do for fun. Per the site, "GAAPP is a global association of organizations advocating the rights and interests of people with allergies, asthma, atopic eczema, and urticaria."1 GAAPP is comprised of patient organizations from 33 countries, encompassing organizations across the atopic disease space.2
Interestingly, GAAPP published an article entitled "10 points to make a Patient Organization successful."3 Rather than summarize their existing bullet points, take a moment to scan through the site (it’s a quick read), and then come back here for my thoughts.
Well constructed, but missing roadsigns
The document published by GAAPP lays a solid foundation for how to start or improve a patient organization or group. It explores the bases of starting an organization including outlining a mission and vision, determining physical space use, and prompts toward developing partnerships, frameworks for organizational structure, and "employing" a Board of Directors.
To its credit, step 1 mentions patients. The document is, of course, vague—one could consider this to be by intention (i.e. to allow organizations to implement steps creatively). Overall, these 10 points could suffice to create a patient organization.
However, these "steps" never get back to point number one—which is identify an initial group of patients with a long term interest to understand their disease, aiming for self-management and willing to share their experience.3 These are the missing roadsigns: the patients.
Patient engagement: The missing ingredient
We cannot simply imply (within this document) or infer (from this document) patients are engaged. Often, step 1 is followed—patients are identified and never contacted again. They are not asked to assist with the operations of the organization. By the time they are contacted with an opportunity to engage, they have moved on and are no longer interested.
They sit on committees and boards, giving their time and energy, and their input may be seldom implemented. Patients are the roadsigns, communicating with the patient organization—which may not even be run by patients with the disease in question—and yet, our presence is often tokenistic.
Redrawing the map: Suggestions from a patient
To make a patient organization successful, patients are required. Yes, we may be difficult, or need education in regard to the functioning of organizations and boards. This may be time-consuming. This does not mean it’s not critical.
Keep patients involved at all times
Patients are not just required in general, but required at steps, if not every step. If an organization’s mission and vision are formulated to what it is thought that patients need, it may be missing what patients themselves actually think they need. Similarly, it is not enough to "include patients" but not seriously take into account their advice—a collective voice or survey approach is needed, as one patient may not and does not represent all patients.
Utilize patient input
While formulating or re-evaluating the organization, have several patients give perspective. Find which other steps patients can be integrated into the discussion for—define ahead of time what the role of the patient will be within the organization. Will there be volunteer opportunities in the greater community—what will they be? Are there aspects of the day-to-day operations that a patient could be providing, like social media or being a part of a peer support program?
Involve patients strategically
When defining the methods of achieving the association’s purpose (point 2, section E) consider exactly how patients will be involved3—and consider if there are a variety of opportunities to be involved that may fit different strengths of patients.
Concluding thoughts on patient organizations
The roadmap outlined in 10 Points to Make a Patient Organization Successful is a good start—perhaps as it’s intended to be. But it’s not going to be successful on its own, unless we consider when and where on that journey patients are going to be truly engaged and involved.
Patient organizations mean well—I truly believe they do. Yet they are frequently missing the patient part of the patient organization. This document is a good start, but in no way should it be considered complete. Patients are ready and waiting to be not just a part of the discussion, but part of the hard work.
How might we more intentionally go from a "patient organization", to a patient centered organization?
Involvement does not mean engagement.
Have you ever gotten "moon face" as a side effect of prednisone?