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Board Meeting Minutes, May 22, 2018 

Participants:  Geri Baumblatt, Judy Danielson, Dave DeBronkart, Peter Elias, Nancy Finn, Sarah Krüg, Janice McCallum, Jan Oldenburg, Burt Rosen, Danny Sands, Joe Ternullo, Sue Woods, Michael Millenson, Vera Rulon

Welcome                                                               Danny Sands

Danny announced that Parika (Pinky) Petaipimol has resigned from the board due to limitations on her time. She’ll remain an SPM member.

Approve minutes from last full board meeting Janice McCallum

Minutes from April 24, 2018 full board meeting approved. Janice noted that minutes are now posted on the website (under About US/Meeting Minutes) & are up to date.

Wins                                                                     All

Burt ran HealthSparq’s What’s the Fix conference on May 17. Danny & Dave & Marge gave a workshop there. Video is available. @WheezyNurse was the Social Media Ambassador (digital host) and served as a link between the live & virtual events.

Joe Ternullo: The NEHEN presentation on May 7 went very well. The audience was very engaged and asked a lot of questions. Joe planned and organized the event.  

Environmental Scan–what are you hearing about?   All

Janice mentioned that Hal Wolf, new CEO of HIMSS, made derogatory comments about patients’ referring to Dr. Google. She’ll pass the presentation & video to others to react & decide how to respond. [Update, Hal’s presentation won’t be made available. It was noted that Hal generally is supportive of empowered patients; it was just the comment about bringing Web search results to appointments that grated with SPM members in the audience at the New England HIMSS meeting.]

PCHA wants the whole Connected Health conference to be ‘Patients Included’. Dave deBronkart will take the lead (working with Andrew Spong (in past, Lucien Engelen was point person)).

Dave deBronkart: Graham Grieve invited Dave to attend 1 day of the FHIR developer days next month in Boston. Dave sees recent progress in the FHIR/HL7 community as a very good sign that the long awaited health data spigot is about to happen. He thinks next month’s event is a big deal. Also, Dave pointed out that Leslie Kelly Hall is on the board of common data interchange committee.

Marketing and Social Media                  Judy Danielson/Linda Stotsky

The 2nd member survey is going out next Thursday. Results should roll out mid –to-late June. The president’s letter that went out yesterday mentioned the survey and asked members to complete it.

The marketing toolkit (previously referred to as the style guide), which will include PPT & Word templates, as well as various version of the SPM logo, should be available in June.

Nancy & Judy (with Linda) are working are on welcome letter for new members.

Danny Sands met with the branding person (Sandra). Her deliverables will include a formal letter template in G Docs & G Forms.

Social media update is posted on G Drive.

#SPM18 Update                                        Joe Ternullo/Sarah Krüg

Joe: Posted an update to the control sheet on the team drive.

Overall goals for the conference: 250 paid registrations; $25,000 in sponsorships; 50 new active & engaged members.

Danny Sands: last year we gave a lot of discounted registrations, so we only had 40-50 paid registrations. Note, members got 50% discount. This year registration fee will likely be $100-125. Need to allow for early bird discounts, etc.

Burt points out that marketing will need some budget to reach these goals.

Re: sponsorships, Geri pointed out that there was lots of interest from last year from sponsors who we caught too late. We should reach out to them to sign them up for 2018. There is an updated sponsorship prospectus on G Drive.

Programming: Sarah: We have 9 confirmed speakers; still extending invitations, but we need to flesh out the agenda. Want to have more “duets”—patient/doctors. Want to crystalize speakers by end of month.

Conference team voted to have Olin (& maybe Involution Studios) involved. Want to invite speakers/sponsors to ignite the brainstorming work. Have speakers under data category; need collaboration speakers. Goal to differentiate from other conferences; not same speakers we always see.

Danny Sands has meeting set up with Patti Brennan, Director of the National Library of Medicine (NLM),  to invite her to speak.

Several members have mentioned a desire to invite SPM founders and have them share thoughts right before Doc Tom award.

Need to plan out agenda to avoid having too many speakers.

Dave: Doug Lindsay—was at What’s the Fix and is an astounding speaker; would like to have him at SPM18. He’s a Citizen Science guy. Sarah suggested that he may be great as igniter for co-design session.

Learning Exchange–Next and future needs             Sarah

We have a great line-up of speakers for kick-off Learning Exchange on social isolation/loneliness. Please circulate via networks. Want to drive attendance. 45 people registered so far. Need more. Registration is open globally. Danny wants at least 100 people.

Dave deBronkart recommends a blog post to publicize the social isolation topic. Sarah agreed to write a blog post.

Membership                                               Tyson/Burt (Tabled)

Peter: will post his concern about how meetings are managed and related membership retention issues.

Advocacy                                                  Vera Rulon, Michael Millenson

Related to MyHealtheData & patient access to data initiative from CMS, we have sent letter to Seema Verma, CMS Administrator, & have a meeting with Jon White & Kim Brandt scheduled for June 5. Danny Sands & Michael Millenson will be representing SPM.

We are planning a response to CMS RFI on changes to a patient’s right and ability to access data as part of Conditions of Participation for provider organizations. There are several areas we want to address, including whether existing patient portals fulfill the needs of patients who want to access and share their data.

Michael: We are like the dog that caught the car; we have wanted to have a voice in CMS/HHS, now we have our opportunity. Note for background: Jon White had been at AHRQ; Danny knows him. Kim has political background, having been legislative aid to Orrin Hatch and had worked at CMS during Leavitt’s term.

Suggestions of what we should offer: stories CMS can use to represent all aspects of data access—why it is important. Offer our expertise. Op-eds, blogs, etc. to support educational initiatives.

Can we offer specific individuals to be involved; to talk to media; talk to Congress? How can we do this so that it benefits both SPM members and CMS.

Advocacy team plans to write letter in support of initiative to give patients access to data. Michael asked board if there are other consumer groups we can join forces with?  (Not HIMSS, maybe PCHA). Danny suggests National Partnership for Women & Families and Richard Gibson’s Health Record Banking Alliance.

Vera: Summarizing what we can offer: 1) pro-bono consulting services (later corrected to offering advice, not consulting services); 2) spokespeople; 3) leverage SPM membership to provide stories, articles, etc.

Peter: with respect to all advocacy matters, as member-at-large: we really need to involve membership earlier. We should change the process so that members are aware when we start an initiative, not after the fact.

Danny: we send out notices about initiatives. We need a core group to be involved in specific initiatives; it can be disruptive if some members who have not been involved just drop in without background in active discussions. Peter points out that if we provide access to active discussions and they’re available on Connect for all members to see, members can review the background in archives and keep current and potentially become active in initiatives at any time. Unless we open the discussions, we can’t expect members who want to participate in new or ongoing initiatives to be up-to-date on previous discussions.

Jan: we should revisit how we disseminate information and get more members involved. Danny: we should continue to try some different approaches.

Peter: Connect allows for conversations to be visible, but not interruptible. If we wait until we decide there is a “there there”, we have already defined the “there” without broader input from membership. Membership needs to know what initiatives we are working on, when we START working on them, not after we have already defined and started planning the initiative.

The issue of how best to involve and inform a wider part of SPM’s membership is an ongoing topic. We will discuss it again next month.

Doc Tom Ferguson Award for 2018      Dave deBronkart/Nancy Finn

Dave: needs the board to review his nomination criteria draft. His draft addresses things that Tom stood for, not contributions to SPM. Sue has spoken to ½ dozen founders & would like to have some of them speak prior to the award presentation.

Other                                                       Danny Sands

Danny: Meredith Drice (Tom’s widow) wants her foundation to support SPM. She wants a proposal. No indication of how big a proposal. Ask will a big chunk of change to help fund the Executive Director position.

Geri Baumblatt initiated a relationship with Astella, a Pharma company that has a new Patient Experience Group. Astella almost sponsored the Chicago event and they still want to support us in some way. Likely will be a bronze level sponsor.

Danny was at a gala to support Boston healthcare for homeless—as guest of someone he knows at Accenture. He met with the head of US healthcare, who really wants a closer relationship between Accenture and SPM. He wants it to be a really big thing. At $5K level now, they want to do something much bigger. It will require a heavy lift on our end; we need to figure out how to manage the process. Again the metaphor, the “dog that caught the car” applies. We have to be able to execute on programs for which we get funding. Note, Accenture carries out a consumer survey every other year.

Reminders/Announcements: Learning Exchange 5/29 1-2pm ET    

Next full board meeting June 26, 2018 at 4pm

Respectfully submitted,
Janice McCallum 
SPM Board Secretary