Nineteen SPM members and Board members spent an entire Saturday in late October reviewing the impressive list of successes SPM has had in 2017 and the partial successes to build on. We began work on plans for the challenges we face. Reflecting on our many important successes during 2017 we talked about what we could learn from our wins, and thought about how to apply this to tasks in 2018. It is impossible to capture all the insights and perspectives of an 8-hour retreat in this article, but some of the highlights include the following.

Freshest in everyone’s mind was the incredibly successful live conference Transforming the Culture of Care held at the Seaport Hotel and World Trade Center on Wednesday, October 26th in Boston. We had an incredible set of speakers and panels and an enthusiastic and engaged audience of 125 attendees. If you weren’t there, you missed a fantastic event – but all is not lost. The event was recorded and videos of the keynotes (including the impromptu musical finish) are available on our Facebook page.

2017 also saw a complete redesign of our Participatory Medicine website thanks to the efforts of many, led by John Grohol. We combined three separate sites into one, reorganized the content to be easier to find and use and to have a clean and mobile-responsive design.

After about 10 months of research, planning, and beta-testing, in April of 2017 SPM launched SPM-Connect, our dynamic new collaboration and communication platform. It replaces our old listserv (a 1980s technology) and has doubled the number of active posters and tripled the number of unique threads. It has also become a vital tool for projects like our conference, the Newsletter, and the Journal. If you aren’t participating in the discussions there, you are missing something valuable. For 2018, the goal is to add content-based tagging to facilitate archiving and retrieving information, and to add some admins from our membership to help with maintenance and metrics.

Danny van Leeuwen led a group that has successfully built a process to publish a quarterly Newsletter that focuses on member activities and news. You are reading it RIGHT NOW.

There were also several areas where 2017 saw important wins or good starts, but where the job is not finished or we want to capitalize on our momentum.

We launched two online interactive and online activities as benefits for our members. The Learning Exchange is a series of short presentations on a topic related to participatory medicine, each followed by a Q and A period. Our Virtual Town Halls are one-hour online conversations where members and individuals on the Board can interact about what SPM is doing or should be doing. We have had two of each and plan to schedule them so one occurs every month, with a schedule on a calendar (see below) on Connect or the website.

In the past, SPM’s advocacy role has been primarily reactive, but we now have an advocacy group that will be working in 2018 to advocate for patient ownership of their medical information. We are changing the framing from a fight for access to a fight for patient ownership of medical information. Reframing is a big deal. This is an exciting development for us. Look for updates and opportunities to help on Connect.

SPM is a membership organization and continues its commitment to keeping the cost of membership low. Our leadership is entirely volunteer, but we still need to raise revenue to keep the lights on.  Corporate sponsorship is one piece of this puzzle. We have done much better this year, partly because of a more organized approach, but also in large part because we are growing in visibility and have obvious successes we can point to. We are working to make sure we stay in the magic sweet spot where corporate sponsorships help support us without any conflicts of interest. Closely related to our work on corporate membership and sponsorship is our focus over the last year on clarifying our brand and strengthening our marketing, an effort led by Judy Danielson.

A huge change this year is that the Journal of Participatory Medicine, our peer-reviewed and open-access journal, is now part of the Journal of Internet Medical Research family. The old articles will remain archived in the old location, but beginning in September of 2017, articles will be available at Journal of Participatory Medicine.

The biggest part of our leadership planning retreat was spent talking about challenges for 2018.

Membership is at the top of the list. SPM’s membership has been stable, remaining in the low 400s with a steady influx of new members balanced by members not renewing. Several previous attempts to increase membership have had little impact. Tyson Ortiz will be working on this issue from a different perspective. Rather than a leadership-run ‘project’ to recruit new members, Tyson’s approach is based on the dual assumptions that people join SPM because they want to do something to support participatory medicine and that if SPM enables members to do things that have value to them they will recruit members to work with them, and retention will improve because of a shared commitment to ongoing projects.

Education is another challenge. For several years, SPM has wanted to create a curriculum for teaching participatory medicine but has not been able to move forward. The stumbling block has been defining the scope of the project. Should it be aimed at patients, caregivers, clinicians, or all the above? If aimed at clinicians, should it be in medical school, residency, or part of continuing education? Should it be part of public school education? How comprehensive should it be? In a sense, the perfect has been the enemy of progress. The plan for 2018 is to start by identifying a group of SPM members interested in creating a participatory medicine curriculum and charging them with defining the scope, milestones, needed resources, and targets for a participatory medicine curriculum they feel it is reasonable for SPM to create. Peter Elias will be the Board champion for this project with a goal of having a curriculum we can point to and share with others by the end of 2018.

One of the items we discussed in depth is very hard to summarize but included how to ensure a bright future for SPM, including best practices for SPM governance, transparency, developing leadership, the difference between leadership and management, and ideal board composition. The complexity and importance of these issues made it inappropriate to attempt ‘answers’ during the retreat. Instead, work on these issues will begin with two specific commitments:

• A small group will be meeting to discuss governance and Board composition in order to better define the issues and options, for later discussion.
• We will have a discussion in the Open Forum on Connect about the best approach to transparency by leadership.

The universe of healthcare is changing and SPM continues to evolve. This day-long introspective review and future planning retreat involving participants from the Board and from our volunteer membership attests to SPM’s commitment to staying at the leading edge of culture change. I predict another banner year.