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Participants: Peter Elias, Dave deBronkart, Judy Danielson, John Grohol, Sarah Krüg, Janice McCallum, Danny Sands, Joe Ternullo, Sue Woods

Minutes from June 12, 2018 meeting

June Exec Committee Minutes (Janice) approved                                                     

Board thread on SPM/priorities, transparency, member contribution & engagement (Peter Elias)

Peter provided comments on his draft proposal. He emphasized that members will be able to see, but not participate in, discussions. To provide input, members would have to copy & paste content into a more open community. Also, non-board members won’t be able to sign up for notifications, due to limits in Higher Logic.

Outstanding questions: 1) when to start; 2) how long should the test period be – 6 months is current plan; 3) how do we decide if it is a success? We should include members in the decision process; 4) Is there anything we need to omit from open access?

Discussion centered on confusion that might occur if parallel conversations take place in the original board community and a more open forum as a result of replicating content to make it available more broadly. Another potential issue: members could copy & paste or do screenshots and share outside the SPM community. We’ll have to have a clear code of conduct for SPM Connect if we open the board discussions to all members.

Sue summed up the discussion: two decision points: 1) Yes/No go forward and 2) how to handle the archive, which may include some sensitive information. Other issues: etiquette –need someone to create the code of conduct and monitor Connect. Peter is not worried about having that ready. Suggestions for start date: Danny proposes we start & announce at conference in October.

Per John Grohol’s suggestion, we will frame this as a time-limited test to assess whether opening up board discussions will increase participation in our initiatives.

Survey (Sue Woods, Judy Danielson)

Sue provided some follow-up information on the member survey. First of all, we ran into more bumps than expected. In brief, we ended up with 43 completed surveys out of 463 that were sent out. Only about 60 were opened. Since only 43 out of 463 were completed, we can expect there was some bias in responses.

With respect to the question about the role of the survey responder, patient advocate was listed most often. There were some providers and some health technology folks. The majority joined SPM to network & contribute on behalf of SPM. Priorities included educating & imparting skills to be both participatory patients and clinicians. Many were interested in advocacy. There was lukewarm interest in funding patients to attend conferences. Disappointing number of “high level of satisfaction” with SPM and the number who expressed “willingness to refer others to SPM” was not very high.

Judy thinks it’s encouraging that education about PM scored the highest, since this is something we have ability to do. She suggests we monitor communications that go out to members to ensure that we consistently include relevant information.   


Danny proposed a budget that was voted on and approved.


Danny pointed out that we need to start gathering names for SPM leadership roles in 2019. He linked to a volunteer page.

Sponsors as members (Janice)

Janice raised the issue of clarifying sponsors as a special class in our membership. She described how some other organizations offer enhanced directory listing for commercial members (typically for a fee). Others spoke about what we can offer to sponsors in exchange for funding our events, etc. Janice agreed to provide more specific examples, but can’t commit to acting on this item until after our conference.

Next Executive meeting is August 14 , 2018 at 4 pm.

Respectfully submitted,
Janice McCallum
SPM Board Secretary