Hugo Campos,  Dave deBronkart,  Nancy Finn,  Joe Graedon,  Terry Graedon, Alan Greene, John Grohol, Barbara Kornblau, Sarah Krug, Deb Linton, Michael Millenson, Danny Sands, Marcus Thygeson.

Announced the appointment of our first Executive Director, Barbara Kornblau.

Journal

Looking for more reviewers. Will send out a survey to everyone who has signed up to review articles to see if they want to remain on the list and know of others who would be likely reviewers.

E-patients.net/ metrics:

Approximately 220 blog posts in 2012. We know from feedback that key policy makers are reading the blog; need more blog writers; encourage all members to contribute

Social media presence: Twitter S4PM has 2200 followers; S4Pm Journal 1700; SPM Face Book page, 1200 likes, Journal, 866 Hashtag being mentioned frequently.

Seal Program Update

About to roll out our Seal Program; registration for everyone with username and password; working on a marketing plan

Partnerships and Collaborations:

Medscape Symposium, Jan 29, Bay Area, CA

HIMSS
Virtual briefing on patient engagement with HIMSS, includes three webinars,
Participation at HIMSS conference, March 4-6, in New Orleans including:
Patient engagement forum, a six hour standalone event alongside HIMSS.
Two articles on e-patients.net blog about the conference with link to registration. SPM verified members will receive a discount on the conference fee.
e-connecting with consumers event led by Ileana Balcu and Danny van Leeuwen.

Next Board meeting April 18, 2013

• Welcome and Introduction – welcoming new Board Members with a quick personal intro from everyone, with personal goals with the Society for the next year from each of us. (Alan – 20 min)
• Approval of July minutes - http://participatorymedicine.org/2012/july-19th-2012-board-meeting-minutes
• Membership and Financial Update
• Memes Update and Opportunities
• Executive Director Search
• Journal Update
• Seal Update
• Lenox Hill Project
  Patient scholarships
• Internal communications / listserv / forums

Participants:  Hugh Campos,  Larry Chu, Dave DeBronkart, Nancy Finn, Joe and Terry Graedon, Alan Greene, John Grohol, Sarah Krug, David Lansky, Deb Linton, Michael Millenson, Danny Sands,  Marcus Thygeson

Board Chair Alan Greene opened the meeting by asking everyone for a short introduction and personal goals for the year as follows:

Alan Green, M.D. Clinical Professor of Pediatrics at Stanford University School of Medicine.  Goal: implementing the seal program; get the Journal moving up a notch.

Danny Sands, M.D., Independent Consultant, Goals  get new people  engaged; implement our  strategic plan  that will move us  to the next stage in participatory medicine and help us understand more  about the patient experience.

David Lansky Pacific Business Group on health. Goal: get more payer perspective and more interaction between payer/purchaser community.

John Grohol Psy.D. CEO and founder of  Mental Health Networks Psyc Central. Goals: reinforce the need for mental health to be included in the conversation; hiring of Executive Director.

Terry Graedon Co-Editor JOPM, Goal: get more people involved in reviewing and writing articles for the Journal.

Nancy Finn, Healthcare Journalist, Author. Goal: spread the word about participatory medicine and e-patients to mainstream health care consumers through the mass media.

Dave deBronkart e-patient dave. Goals: get out the word & initiate action agendas on patient engagement and patient empowerment; increase participation in e-patients.net blog.

Joe Graedon, Co-editor, JOPM. Goals:emphasize patient safety; reinforce patient access to information and the Open Notes initiative as part of our mission.

Marcus  Thygeson, M.D, VP Medical Services Blue Shield.  Goal: patient driven medicine and shared decision making as keystones in participatory medicine.

Hugo Campos, e-patient thought leader. Goals: positioning Society and its work in the mainstream; Bringing transparency to data related to medical devices.

Deb Linton –Master’s candidate, UC Berkeley  Goal: roll out Society’s long developing initiatives.

Michael Millenson, President of Health Quality Advisors LLC, President-elect SPM. Goals: expand our  communications and promote the strategic plan initiatives and membership outreach.

Sarah –CEO/Executive Director of CANCER101, Goal: drill down into both our Education & Research pillars by launching patient, caregiver & health care professional education around participatory medicine and aggregating research that demonstrates impact of participatory medicine.

Larry Chu, M.D. Anesthesiologist, Director Medicine X, Stanford CA. Goal: reinforce emerging technologies from patient perspective.

Minutes from July 19 Board Meeting approved

Membership and Financial Update (John):

• 373 active members:  approximately two dozen corporate members and the rest are individual members.
• $117,000 in the Treasury
• Currently engaged in active membership recruitment Alan suggested we develop internal dashboard to see how we are doing on our goals

The State of the Movement: (Dave):

Dave talked about the fact that this is truly the critical time for the participatory medicine movement and that patient engagement, patient empowerment, e-patient have finally become commonly understood buzz words reinforced by the mandates of Meaningful Use. Dave also talked about the need for more member involvement in the e-patient.net blog that he can no longer manage alone.  He wants to see expanded action agendas in participatory medicine.

Executive Director Search (John):

37 applications submitted; 11 individuals with qualifications and relevant experience selected for review; now paring down to five most qualified candidates to interview; Hope to make an offer to best candidate by the end of the year.

Danny added that managing volunteer leaders must be part of the Executive Director’s responsibilities.

Part time Interim Admin Support (Sarah):

Responsibilities: Grant requests; Oversee list serve moderation; enhance communication efforts; special projects. Danny proposed as a possible alternative, we hire specific consultants for specific projects.

Motion: Authorize Executive Board to hire part time interim admin. between now and the next Board meeting, within the parameters of our fiscal limits. Passed.

Journal Update and Stats (Terry and Joe):

Continue to get submissions;

Have added editorials from staff.

Biggest challenge is to find enough reviewers. Need two reviews for each article.

Also need to encourage more people to submit articles.

We will generate and post a page with instructions about being a reviewer.  To sign up as a reviewer or to submit an article, http://www.jopm.org/submissions/

Stats: Articles 37 submitted in 2012 to date, 25 accepted/published: 2 Letters. 8 Editorials, 2 Commentaries, 1 Research, 1 Review, 7 Narratives, 2 Conference Reports, 1 Book Review, 1 On the Web.

Seal Update (Alan):

Participatory Seal program that encourages providers and patients to engage in a collaborative relationship is underway, moving forward and live on the website. Now we need to get patients and providers to take the pledge. Would like full Board and membership participation. To take the pledge go to:http://seal.participatorymedicine.org/

Lenox Hill Project (Sarah):

SPM is collaborating with Lenox Hill hospital in NY (part of the North Shore LIJ System), to build a one-year curriculum for residents on improving the patient experience. We are currently developing measurement instruments for this curriculum. A Focus Group was held to review strengths and weaknesses of this approach. Elements of the program include:  engaging the Center of Learning and Innovation; presenting a lecture delivered by SPM patients; secure grant funding for faculty time to design and deliver the curriculum.  All tech costs are being handled by the Lenox Hill system. We will publish and solicit press coverage on this initiative and ultimately transfer our leaning to other institutions. Materials produced in conjunction with this initiative will be co-branded.

Patient Scholarship Program Pilot (Sarah);

In conjunction with Body 2.Partnership with Patients and coordinated by Regina Holliday, SPM obtained a grant of $5K to support the travel costs for 10 patients to attend the conference. Each patient received $500 to defray their travel costs. Information on the availability of this scholarship was communicated through the list serve.  We are now looking for another grant that would expand this scholarship program and enable SPM to help patients with the cost of attending conferences Michael indicated that this is the type of conference that the Society should be organizing and running. There is a possibility that SPM will organize a pre-conference day-long session in collaboration with Health 2.0 or Connected Health, next fall. Our Executive Director would manage these programs.

Internal Communications (Michael):

We are getting reports that our List Serve is off putting to many people so we are looking into the Hoop La Forums and have the green light from the Executive Board to extend the Hoop.La Forums trial for 3 months. Hoop La Forums is a discussion platform that resembles the richness and functionality of forums with sections and discussions, without the need for a highly skilled admin to run it. The cost is $30 per month Hoop La Forums will not substitute for the list serve. It is in addition, and can be sent to an individual’s email inbox. There is no reply allowed. Once Hoop La is fully functional, we will notify our members and ask them participate in training sessions. The goal is to get our entire membership involved. We also plan to survey participants to get their feedback.

Summary of Action items:

• Everyone to register and nominate individuals for the Seal Program
• Need reviewers and article writers for JOPM and more writers for our blog
• Need to expand funding for patient scholarships through a grant
• Will select an Executive Director before the next Board Meeting
• Encourage our members to try out Hoop.la

Next Board Meeting, January 17 2013

Thursday, January 19, 2012 12:15 pm  EST

Time 1 Hour 17 Minutes

1/19/12 9am PT/noon ET

1. Welcome, and Minutes: – Alan Greene

‘Update’ items below are chances to hear quickly what is going on as a springboard to focused conversation. We’re looking for the group to give feedback/fresh ideas/fresh connections to those implementing. Votes are not needed for the ‘update’ items. Input to advance these areas is. 2. One-minute snapshots: Quick check-in from each board member. What’s new in your participatory world?

• Members went around and shared updates, projects, and thoughts on the course of PM

2. Update on Membership/Finances (5-10 minutes) – John Grohol

• ~$81k in bank account, 280 individual members, 19 innovator organizations, 2 corporate bronze members, and Mitchell Foundation’s continuing support.

3. Governance – Alan Greene (20 minutes)

• Chief Communication Officer - we want this position to be someone who can establish high level connections with leadership, have volunteers as do-ers, and maintain a more of a visionary perspective about how to develop our communication platform. This will also provide structure to avoid existing disconnects between leadership and communication team (one of the most active volunteer teams)
  • Motion passed
  • Exec team will further develop key criteria for position
• Dave notes that it’s a different communications agenda to do a professional media outreach than it is to develop an online community
• Members at Large - Should the members at large be elected by the membership?
  • There is a concern about the disruptive nature of bringing any new person on – the board might want to have more of a say
  • Sarah suggest that the Exec Committee nominates Members at Large and then letting members vote
  • Motion to have Exec/Nominating Committee develop a slate of candidates for two members to be elected by the membership – Motion passed
  • Select one new board member to invite (bios distributed) of four total to join board throughout this year. Nominees for new Board positions will be voted on via Survey Monkey
• Advisory Board Created This is a position that will help us stay in contact with high-powered ex-board members. We want to create an formal open door policy for future SPM Board members to contact leaders in the field. Without this position we run the risk of hollowing out our leadership. Board of Advisers motioned for and created.
  • Position Motioned for and created

4. Strategic Planning Update – Sarah Krug (10 minutes)

• This might need more detail on the Exec call – not sure how much time we had to discuss

5. Seal Program Update – Alan Greene and Indu Subaiya (15 minutes)

• Lot’s of interest from multiple sectors and people willing to help
• We’d like to compliment this with a CME course eventually
• “Last year here at Health 2.0 we crowd-sourced comments on our draft guidelines for Participatory Medicine (originally authored by Indu Subaiya, Carol Peckham, and Alan Greene). We’ve incorporated feedback obtained here….”

Lot’s of interest from multiple sectors and people willing to help. Eventually, we’d like to compliment this with a CME course.

Last year here at Health 2.0 we crowd-sourced comments on our draft guidelines for Participatory Medicine (originally authored by Indu Subaiya, Carol Peckham, and Alan Greene). We’ve incorporated feedback obtained here and subsequently throughout the year and are now back with the results. While preserving the deeper guidelines as a resource, we’ve focused the dozens of guidelines down to 4 simple, actionable, measurable Goals that will be the basis of a Seal Program identifying providers willing to make these commitments. These Goals were selected both to recognize who is practicing Participatory Medicine and to actively engender greater participation. The initial target is to have 10,000 clinicians obtain the Seal.

1) Health Data in the Hands of Patients. Participatory providers will proactively provide direct access to laboratory values and other health data as a matter of course. “We’ll call you if there’s an abnormal result,” has no place in Participatory Medicine.

2) Feedback from Patients. Participatory providers will encourage patient feedback and make arrangements for anonymous feedback mechanisms.

3) Patient Advisory Council. Each participatory provider will convene a group of patients to provide input and feedback. The group could do its work formally or informally, virtually or in person. They will consider suggestions and feedback provided by other patients.

4) Resources in the Hands of Patients. Participatory providers will provide resources for additional learning about every diagnosis made (including age-appropriate health maintenance for a normal physical exam). These resources may be physical handouts, web Urls, book titles, the names of mobile apps, etc.

Providers committing to these four items could be nominated by patients, peers, or themselves to receive the Society Seal. We would maintain a public list of these providers and the opportunity for patients to comment on these four aspects of Participatory Medicine in the practice. We intend to collect the best stories of e-patients and participatory providers and feature them on a panel here next year.

6. Journal Update – Terry Graedon (10 minutes)

• Medline probably won’t be considered until spring

7. E-Patients.net Update – Dave deBronkart (10 minutes)

Opening Remarks:

• Journal article publication rates going up as well as our page views as seen in the difference between our top February article and our July article

• Minutes Approved
  • Here is a link to the minutes of the last meeting

Finances:

• Bank balance: $93,801
  • 2Q 2011 – $8268
  • 2Q 2010 – $5397
  • 53% gain in revenues from 2Q 2010.
• Active members: 217 individuals, 21 orgs

Discussion around the position of President Elect:

• The President Elect position was created in the bylaws so they could work alongside the President and learn the culture of our young organization. However, we found it difficult to identify and elect someone to this position. There was some concern around the board pulling in people from the outside and automatically nominating to become President Elect
  • Q: did more people not step up as a result of a timing issue?
    • A: It was difficult to find anyone from the existing board able to take on the additional responsibility
  • Discussion refocused on current election since the bylaws were recently changed to allow for this type of position – if further change is warranted, the board will, again, go through the formal process of changing the bylaws.
  • The nomination committee had a list of 12 people that they narrowed down to people that would make a good fit. While it’s a shorter list than we would have liked we did have multiple applications.
  • Q: bylaws question: how to remove someone if someone isn’t qualified
    • A: majority vote
  • Bios reviewed

Elections:

• Discussion then vote
• President-Elect
  • http://www.surveymonkey.com/—- (vote for one)

• Members-at-Large
  • http://www.surveymonkey.com/s/—— (vote for two)

• Optional – Co-Chair to Replace Alan, whose Feb 2010 “12-week” stint at Co-Chair is truly over.
  • Resolution:  Alan will continue in the role of Past President.

Guidelines:

When Indu joined our board, she wrote in her introductory packet:

I’d like to see SPM become a “seal” of sorts that comes to stand for the goals/values of participatory medicine. Just like the “People Love us on Yelp” sticker signals to me that a restaurant is worthy of my service, I want SPM to find some way to recognize providers, systems etc. that demonstrate the tenets of participatory medicine.

I also think SPM can help fuel the broader consumer movement about access to information/ access to personal health data. Without siphoning off into a micro movement, I’d like to see us work actively to find common ground with Health Data Rights, ONC’s Patient and Family Engagement, (and of course, epatients.net and Health 2.0) and other companies, groups to create an educational campaign telling people HOW to ask for their data/WHAT their resources are etc.

In short – a 2 sided effort: (1) further ignite consumer demand for change toward “participatory medicine” while (2) showcasing/rewarding the providers/companies/systems that are meeting these demands, until there’s system-wide change.

• Board asks series of questions in a preliminary evaluation. Committee answers based on their preliminary research. Plan will continue to evolve.
  • Q: What is the process by which we’ll make this happen?
  • Q: Any of our members can use the seal but how orgs  do this
    • A: an org can self nominate so long as patients have the opportunity to review
  • we don’t want to sell the seal “good house keeping label lost it’s value.” we want to get the word out about Participatory Medicine more than we want to raise money
  • while registration won’t be required we can have controlled distribution of seal / compact / reporting (perhaps QR codes could be employed)
• The next step is to approve a Seal Program beyond the bounds of the society with the Guidelines committee to develop a proposal
• The Guidelines QuickTeam now has such a proposal on the table: 3 simple, measurable commitments to get a seal. Our aim is that 80% of primary care docs will have heard of the seal within 1 year, and that 5,000 will have signed up.
  • We still have a major difference of opinion within our Board about these guidelines, needing vigorous discussion to resolve. – Some feel strongly and rationally that our priority is to build membership, to do that we need to create value, and thus the seal should ONLY be available to members. It’s a small price to pay, and gives people a reason to join. Some believe, on the other hand, that this is more likely to spread like wildfire if it is an effort to get all docs just to agree – and that we will end up with more new members this way.

Corporate Members:

Refining our value proposition: this may blend into the previous conversation on
Guidelines.

Goals:

Members instigated a goals workgroup this year, sensing a lack of direction, to which The Exec Team responded. The exchange raised both practical and structural questions for us to address. It may help to coordinate the Social Outreach committee with Guidelines and Exec committee.

• Minutes August 30th 2010 Board Meeting Call

• Minutes May 11th 2010 Board Meeting Call

Meeting minutes are written with board members in mind and my contain phrases or terms that need clarification. We see this as a great opportunity for members to help the board improve their communication with the Society as a whole. Please feel free to ask any questions about these notes to either the list serve or directly to deborah.linton*gmail.com.