About Mayo’s Crowdsourcing their Social Media Advisory Board

When Mayo announced that they were going to be crowdsourcing their advisory board, my first reaction was along the lines of , “Hmmm, well, that’s an interesting approach.” I was peripherally intrigued, followed the buzz, which included objections, excitement, concerns, arguments, endorsements, and more. The buzz was actually more interesting than the announcement itself.

I took a look at the announcement. It didn’t say very much about what the responsibilities would be for the Board Members. It said, “Members will provide advice and feedback to our center leadership on various programs and initiatives, and will be a source of ideas for worthwhile projects. They also will contribute content for this site and their perspectives on health-related developments in social media.” That’s all good stuff, but what are they really expecting the board members to do? I’ve been on Editorial Boards & Advisory Boards that were mostly honorary posts with nothing to do, and others where they practically took the place of your “day job.” I also wondered why my own institution is not doing something similar.

Of course, I also took a look at the initial baker’s dozen already selected for the advisory board. To my delight (and fitting my expectations), 11 of the 13 are people whose activities I follow closely and with whom I communicate regularly already. How could I not look at that board and feel a sense of rightness and satisfaction, as if I had chosen them myself. This is my crowd, the people I consider my peers, my friends, my “peeps”. These are mostly the other ‘loudmouths’ (like me!) on the Sunday night #hcsm chats, which is THE place to be for people really committed to health and social media.

There are a few other names I would have liked very much to see there — Suzanne Fox, Gilles Frydman, many of the old crowd from ACOR’s Medical Webmasters List (MWM-L), not the least of which is Denise Silber. On the other hand, a lot of the folk I want to see are folk who’ve been around for a while, watching this area evolve for years, with a long view. They have a couple young folk, and that is a good thing. It wouldn’t hurt to have a couple more, like Andre Blackman or Stacy Stone. An Advisory Board should really represent a variety of views & perspectives, like a jigsaw puzzle or patchwork quilt.

I could see a lot of great names I’d expect to see on a list like this. I still didn’t see where I would fit in. I also had a little sense of, well, conflict, since Mayo and University of Michigan both like to think of themselves as major leaders in healthcare. But since folk kept nudging me, I took another look. I started looking at areas of expertise, type of background, early training, other factors. Then a lightbulb went off in my brain. There were no librarians. No medical librarians. No technology or social media librarians. No information experts or informaticians who have done that kind of work and could represent those skills and perceptions. I also didn’t see anyone who specialized in health literacy or plain language (which are actually kind of another librarian specialty). Nor did I see anyone with special interest or expertise in web accessibility, or who I knew had worked with communities of people with special needs, either in physical or cognitive disabilities. (Originally, my interest in that area was in assuring information access for people with physical disabilities, but then when I found out my son is on the autism spectrum with about as many learning disabilities as I’ve heard of, my interest, ahem, broadened.) OK, I finally saw a place I might fit in. They might have people there who are working in these areas and I just don’t know it. That’s cool. But these are concerns that I very much hope will be represented.

I started thinking about how communities are represented in the board. I see many people who Twitter and blog as their primary social media communications. Note, I would fit in that category myself. I saw a few people who have built exceptional communities, but most of those are communities for health care professionals. Aside from Dave Bronkart, I don’t see anyone who has really focused primarily on patient communities. I would really like to see someone who is either a community manager for active patient communities (like the list managers from ACOR) or someone from an organization like PatientsLikeMe. I’d like to see someone on the board who represents the points of view of the little guy, man on the street, the have nots. Here I am, single mom, special needs kid, no car, hardly ever travel because I don’t have the money. I see these organizations all the time, with great wonderful big name folk on their boards, but no one from the communities they are supposedly trying to help. You need that point of view also, and preferably a few people from “the wrong side of the tracks” so you can make a good effort to ensure your communications reach that broader community. In all the buzz, many folk had mentioned that the current Advisory Board is (ouch) 100% white and almost all men. That’s a problem, a big one. They need more than one person who can represent the kinds of difficulties in accessing social media experienced by people with divergent relationships to the digital divide, and the reasons so many people are deeply profoundly engaged with social media when they have physical disabilities, lack of economic resources, or who are caregivers for people in these situations.

Round about this point, I realized my view of the Advisory Board for the Mayo Clinic Center for Social Media had changed. I wasn’t thinking of this board as Mayo’s anymore. I was thinking of it as THE Advisory Board for social media in healthcare. Not just Mayo, but representing the needs, concerns and voices for a global audience with diversity in every aspect, connecting with international organizations such as WHO and the UN, advising governmental organizations such as the FDA and CDC, providing guidance and recommendations for social media use with communities ranging from micro and niche communities such as support groups for rare diseases through ubiquitous and omnipresent communities with major health concerns such as the homeless. Mayo probably isn’t really setting themselves up to do this. What I’m envisioning is an awful big job. So very likely, what I’m imagining for the Mayo Board is all wrong for them, since they must first and foremost address the needs of their own community, their clinicians and their patients. But … I can dream, can’t I?