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Saturday, October 27, 2012

Trapped Energy at #PCORI

I spent most of Saturday October 27th at PCORI- Patient-Centered Outcomes Research Institute meeting Transforming Patient-Centered Research: Building Partnerships and Promising Models.  It was the first conference day.

I arrived a few minutes late because it was the earliest I could find a sitter on a Saturday with short notice.  A week before I did not think I would be attending this meeting.

I first heard about the goals of PCORI from Sue Sheridan in May 2012.  Do you know Sue?  She is a kind beautiful woman who is an advocate due to two medical errors.  Her husband Pat died in 2002 after a radiology report that described cancer was not communicated to his care team.  Their son, Cal, born in 1995 suffered brain damage due to neonatal jaundice.   She has suffered so, yet she strives to help others.  Many of us in the patient advocacy community rejoiced that such a dedicated advocate was selected to be Director of Patient Engagement at PCORI.

Sue called me because she was helping plan a PCORI meeting on data in July.  In early May she asked me to submit a bio to be considered as an attendee of this meeting focusing on data.   At the end of the month she let me know I wasn’t a good match for this meeting as I focused on patient records and this meeting would be about HIT. 

I wondered a bit at that.  HIT is sorta my thing, but I shrugged my shoulders and went on with plans to create a Partnership with Patients Summit in September.  I got a few form emails from Sue after that and in one she encouraged all recipients to request to attend the meeting in October.  I also got a letter from Helen Haskell with the same request.  So I submitted a request to attend.  On October 9th, I got an email that said:

“Thank you very much for your interest in attending the PCORI workshop Transforming Patient-Centered Research: Building Partnerships and Promising Models, October 26-28, in Washington, D.C. We received more than 350 statements of interest and were overwhelmed by the commitment and passion expressed by our patients, caregivers and other stakeholders.

Due to limited event space and high demand, we unfortunately are unable to invite you to attend the workshop in person.  You are important to us and we want to capture your ideas and energy as we build PCORI’s patient engagement initiative.  We will provide a webcast for the workshop and opportunities for you to provide feedback on the workshop’s six breakout session topics. Details will be distributed before the workshop, so be on the lookout for another email from us in the near future.”

I recently learned one of my friends and fellow advocates Joleen Chambers got a similar response.

So, I thought that was that.  But on Monday I received an email from Sue that there was a mistake that I had not been invited, and even though it was late notice they would like me to attend.  So the mad scrabble to find a sitter began just as I was preparing to fly to Korea to present.  By Friday I found a sitter.

At 8:45 on Saturday I found myself wheeling art supplies into the grand ballroom of the Renaissance Hotel.  I set up my easel and began to paint the rest of the day. I would finish it at home this evening.

“Trapped Energy.”

"Trapped Energy"

When I finished this painting and was taking a picture my six-year-old Isaac came over to look at it. He said, "What is the goal of this maze? To get all the money before the time runs out?" I thought about all the discussion I heard today and said, "Yes, Isaac that is pretty much it.”

My impressions of PCORI meeting day 1

Research FUNDING

My prior experience with patient partnering in research was had through participating in The Learning Health System Summit.  That is a group consisting of of public and private enterprise creating opportunities to share data sets and research.   I wish we had a transcription of that event.  I would feed it into a word cloud generator.  I bet we would see the word share looming large.  At the PCORI meeting I heard the words funding and incentives about as often as in a Meaningful Use meeting at an EMR conference.


I was initially dismayed that there was no WIFI at this venue, but was delighted when the staff had it turned on so attendees could tweet.  This event was live-streamed in the morning.  There was quite a lively twitter stream, with the majority of the tweets coming from individuals not in attendance.  I grew concerned when I realized the individual tweeting for PCORI was not answering questions on the stream.  I went to Sue and asked her the questions and tweeted out the answers. 

Workshops in lecture style

In the afternoon we were put in numbered groups to attend workshop sessions.  I was in group number 5.  Lori Frank from PCORI facilitated our first session.   She stood in front of the group and called on us if we raised our hands.  She wrote our suggestions in small print on a large paper-covered board. When it came time to discuss the topics she had to say them out load since we could not read such small print.  

Small writing

Sessions were less than an hour and then we would move to the next room.  Each time I moved I had to break down my easel and gear. Soon group 5 left me behind and I just stayed in the same room for the session.  Eric Meade from the Institute for Alternative Futures facilitated this session.  Eric discouraged talking among attendees. When I and another attendee began discussing our concerns that so few people applied to attend the PCORI meeting and many of those turned away, we were talked over by Eric and he called on another attendee.  He also wrote very small on the board.

In the next session I stayed. I tried not to comment too much, but when another attendee mentioned the board was unreadable.  I asked why couldn’t he write larger?  There was a note taker in the room for his benefit. Wasn’t the board for us?  He said it had to be this way and he had his reasons.

And that is when I packed up my easel and left the meeting.  I had had enough.  I was tired of being a mouse in a maze.  I was tired of being led from room to room.  I was tired of hearing about the importance of being funded and the short time table to get those funds.

In the maze

We were supposed to answer two questions on this conference day:

1.How can PCORI best measure the effectiveness of patient and stakeholder engagement in research?

2.What novel methods can patients and patient advocates propose for evaluation of research engagement that would capitalize on the growing networks of patients engaged in research?

I want to focus on that second question and the word novel.

Novel:  of a kind not seen before; fresh; new; original

I wanted to hear this group speak about the Quanified Self-movement, yet I met attendees who had never heard of Patients Like Me before today. If you look at this painting here is the hope.  This patient hand reach up out of the maze beyond and above the enclosing walls.  Here is the patient in the center able to see a new horizon, reaching toward the cloud informing a greater crowd of the greatness that is coming. 

Patients Like Me

I want to see one aspect of PCORI engagement determined by a robust SYMPLUR report or perhaps a good Klout Score.

I want to see the folks talking about disparity without equating internet access and affluence. Mobile is the great equalizer.

I want to see a thriving PCORI group on Facebook, because although Sue is great patient advocate she cannot do this on her own. We need to support the mission in an open and transparent fashion.

I want to see an unconference at PCORI.  I want to see all these wonderful bright people determine the agenda themselves.

I want to see an equal number of providers, patients and researchers in the same room taking with each other.  We will never have value in the eyes of the medical establishment if you keep having separate meetings.  Separate is not equal.

I want to see these novel things, so I can paint a different picture.  

Update October 31, 2012

It has been a few days since posting this.  Since then I have introduced Sue to Josh Rubin from the Learning Health System and MarkScrimshire from HealthCamp as he specializes in Health conferences.  Sue was happy to hear of their work.

Kelly Young also posted a blog about this conference: Creating a Culture for Patient Centered Research.

A few attendees have reached out to me saying they felt welcomed and appreciated, and that is important to acknowledge.  

In the comments field below Kelly stated my concerns better than I did in this post when she said."My concern is that PCORI will have novel goals, but then attempt to accomplish them using the same old ways of doing business. Internally, they need to consider what kind of relationship they want to have with this community that they say they want to build. Then, they need to nurture that relationship and learn from it. While this may require changing some specifics, like writing larger on the board or training someone to reply to Tweets, it is more about establishing relationships that model the kind of of respectful, democratic communication that PCORI hopes will take place within each of its research teams.


  1. Sherry Reynolds - @cascadiaOctober 28, 2012 at 12:41 AM

    "Then it seemed like falling into a labyrinth: we thought we were at the finish, but our way bent round and we found ourselves as it were back at the beginning, and just as far from that which we were seeking at first." ...

    Hidden in your maze and frustration is the solution.. Sometimes a maze can have many entrances and exits and it can entrap and ensnare us but occasionally you come across a Labyrinth with a clear path to the center.

    In Greek mythology it was built to contain the Minotaur and was so complex that it's builder could only find his way out by using a skein of thread called a clew or clue.

    What sets a maze apart from a labyrinth now however is that it has one single path that leads you into the center and back out again..

    The patient is at the center but I fear that most of the world is lost in a maze and unable to find their way in nor out.. We the patients are the ones who hold the end of the thread. the clues to healing not only ourselves but the health care system itself.

    Trust the journey Regina you and many others are on the right path.

    @cascadia Sherry Reynolds

  2. Thanks for articulating and illustrating the feelings many of us on the outside looking felt during the first part of the day. I also received that email notice that I was not selected and offered to be a last minute inclusion if anyone could not attend. Alas, I did not get the call like you did. Thanks for sharing your perspective. I look forward to this morning's session.

    1. It was a fancy space, but it was by no means full. More people could have been there, I don't understand why they limited it so. I wonder if there had been a few more rabble rousers we could affected the form of instruction.

  3. Dear Regina-- Thank you for this candid and disturbing post. You have illustrated a crucial point for us to remember. Attending meetings as patient advocates is not enough -- even if the meetings are organized by patient advocates. We need to be present in significant numbers, be integral parts of the dialogue -- not content to be admitted, to sit on the side and to listen -- and especially not to be passive bystanders in meetings dominated by business concerns based on maintaining the status quo in health care delivery.

    Thank you for your wonderful paintings and for your efforts on behalf of patients.

    I think the time for learning by observing these meetings has now passed. We know the landscape well enough by now to insist upon full participation.

    1. Thanks Martha. I find the painting really hard to look at, hopefully the post can explain the frustration. Yes, we have grown beyond this kind of meeting.

  4. I am so relieved to see both Regina's artwork/blog and Cascadia (Sherry Reynolds') comment. Both of you are visionaries and provide clarity. The PCORI meeting was frustrating, but our larger mission sustains us through these barriers. I am comforted that I am on this journey with patient advocates such as yourselves. PCORI relevance and viability depends on organizational leadership quickly responding to the messages provided by patients at this workshop.

    My best,

  5. This is brilliantly sad.

    1. I think the only way we ever get change is to be honest and open about what is going wrong.

  6. Regina, thank you for your feedback on my facilitation. Clearly it would have been useful to have created a "parking lot" for thoughts and ideas that were important, but not directly related to the intended topic of the session. I'm sorry if you felt you were not heard.

    1. Not really interested in parking lots, they are rather lonely places where little happens. We need venues where organic change can be embraced and encouraged. We need less command and control and more chaordic synergy. And I have never been fond of apologies that contain the phrase "if you felt" it is a non-apology apology see wikipedia for more formation

  7. I commend your courage Regina. We need voices like yours to park the cordiality and just be candid and true.

    Novel is the new "new". As a doctor myself I want innovation and diversity in practice. No leading by degrees or titles but plain and simple sincerity and openmindedness and determination. Fill me in the symplur hashtag or facebook. Will find time for that. Keep on shining woman!

    1. Thank You Gia. I really appreciate your feedback. Symplur rocks! It is a great way to determine the potential reach of the conversation.

  8. Regina, I admire your guts, your willingness to challenge authority. But IMHO your review of the PCORI event is off. I was a facilitator, so potential bias declared now. People talked about the Quantified Self Movement in the track I facilitated. And if some of the patient advocates weren’t familiar with Patients Like Me, good to know - the less sophisticated still have life experience that can inform research. In all five groups I worked with conversation was driven by patients and patient advocates – not researchers, docs, administrators - that WAS a novel experience for me. People challenged when I got something wrong. I heard new ideas that weren’t in the PCORI strategic planning hopper so far, and many refinements of others that were that now have potential to inform more sensitive responses. Among those refinements: mobile is not yet the complete equalizer you assert it to be in your blog entry – that sentiment offered by several dedicated patient advocates at the event. Did you not hear that? So, we differ on this one. Still glad you speak up. Power to the people.

    1. Hi Marty, since there were so many different people attending 5 different tracks with various facilitators, people obviously had different experiences. And most of them were positive, I trust. I had some really positive experiences this weekend too.

      However, I hope that Regina's experience won't be dismissed as an aberration. When someone thought that I was questioning the way something was being done at the workshop, I was met with rudeness. That person had no idea that the gentle advice I could have offered would have been valuable or what my qualifications are to offer it. He just saw me as a patient-participant and was dismissive of me. This talk-down approach is exactly the opposite of the attitude that PCORI means to foster in the research world. To quote a cliche of movements, as the emerging PCORI community, we must be the change. We must work through these communications issues so that we can spread it to the new research culture we develop.

      That said, I was treated very well by other staff and board members, so I have faith that when people like Regina and me speak up, it will make a difference. Thank you for replying here and continuing the conversation. That is exactly what is needed.

  9. We did attend different tracks but I saw no discussion of quantified self in my sessions. Also the complete lack of embracing the twitter audience in this day in age was unacceptable. I am not the only one who was concerned Rawarrior also posted a blog:

  10. Regina,

    I am excited to have had the opportunity to engage with you again. Certainly, your work within the arts and advocacy for technology is vital to “the movement”.

    This was my first PCORI meeting and after speaking with a number of participants I found that most (including myself) left with a sense of empowerment.

    If I had a paintbrush, I would share my experience from a slightly different lens. For each of the boxes you depicted, I see the unique experiences of each participant in their varying roles as individuals, patients, caregivers, researchers, health care providers, community participants and health care advocates.

    As so I see the executed vision of the essence of equality in voice and an opportunity for the landscape of healthcare to be changed by an inclusive effort of developing a common synergy for this health care change movement. Patients must become the nucleus of all that we do in healthcare. And in getting there we must embrace all the relevant and important issues (including the digital divide). In doing so, we must support the unique voice of very different people so that the voice of your husband lives on, the voice of my father lives on and the voices of so many people whose lives were impacted by adverse outcomes.

    In getting there I have to applaud PCORI for the courageous effort and attempt in bridging those gaps, discouraging fragmented messages and organizing a systematic approach toward such a diverse group of voices being heard. This is a REALLY BIG agenda. As an early careerist researcher, I agree with you about the urgency around technology; yet we must also embrace there are so many other competing urgent agendas to consider.

    I’m certain you can appreciate the words of Martin Luther King Jr…I have a dream that one day this nation will rise up and live out the true meaning of its creed: "We hold these truths to be self-evident: that all men are created equal." This is our hope. This is the faith… With this faith we will be able to transform the jangling discords of our nation into a beautiful symphony of brotherhood. With this faith we will be able to work together, to pray together, to struggle together...

    I agree with your earlier bloggers…we are track. Stay encouraged…we are on the right path; let’s embrace the journey because together we will get there.


    P.S. this is my first blog (ever)…so thanks for encouraging me toward improvements in my use of technology.

    1. Dear Knitasha,

      It was great to meet you and I am so excited that you posted in the comments field. I am sure my frustration in part is being very used to the unconference or open space form which allow for organic organization to address large topics. Hopefully from this we will all take lessons on how to make this better.


  11. I was not there, and reading Regina's post makes me somewhat glad I wasn't. I would have popped my cork.

    I recognize that PCORI is moving into a landscape heretofore unexplored by healthcare research: actually talking to patients. It seems that they've got the "talking to" part down, but the "listening to" option is yet to be enabled.

    The painting is painful to look at, because I see what inspired it. More silos ...

  12. There are some specific concerns that some of us have with the way things were done at this workshop including those listed by Regina. And the concern that many of us have is that PCORI (board & staff) understand that, to us, those problems are symptoms of a deeper problem. To some, that might be stating the obvious; however, I want to be clear to others that the problem will not be fixed by just addressing the symptoms. If the next facilitator just writes larger on the board, that does not address the underlying concerns that some of us have. My concern is that PCORI will have novel goals, but then attempt to accomplish them using the same old ways of doing business. Internally, they need to consider what kind of relationship they want to have with this community that they say they want to build. Then, they need to nurture that relationship and learn from it. While this may require changing some specifics, like writing larger on the board or training someone to reply to Tweets, it is more about establishing relationships that model the kind of of respectful, democratic communication that PCORI hopes will take place within each of its research teams.

    1. Kelly that was incredibly astute and well written. Thank you for explaining the over-all frustration. Where I focused on specific interactions you explained the disconnect. You are right. I am asking for more than larger writing. We need open communication where all parties are equally valued.

      Thank you.

  13. I hope many of you will apply to participate in the 2nd National Community Partner Forum on Community-Engaged Research, Dec 5-7 in Washington DC, funded in part by the National Institutes of Health.* The meeting is designed "by and for" community partners in health research. The application deadline was Oct 12 but we are continuing to consider applications on a space available basis. I’ve shared some background information about the forum below. The call for applications can be downloaded from the forum webpage at

    Community engagement in research is central to understanding and addressing racial, ethnic and socioeconomic disparities in health. Research funding agencies are supporting faculty members and institutions to engage communities as partners in conducting research. As more community organizations enter into research partnerships with institutions­ as well as initiate and conduct research, it is clear that we need our own networks for professional development, mentoring and advocacy in order to advance the social change through knowledge and power sharing that must happen if we are to achieve health equity in this country.

    At the inaugural National Community Partner Forum in December 2011 in Boston, an agenda for change emerged: For research to have any hope of moving the needle on health disparities, communities of color and low-income communities need to have (1) power in decisions made about research (2) the capacity and infrastructure to engage as equal research partners with institutions and conduct their own research and (3) significant roles in building the capacity of academic institutions to engage and partner with communities. As community leaders who are passionate about health equity and social justice, participants quickly came together around the need for research equity and justice – through the co-production of knowledge and building democracy in the shared governance of their partnerships. Inaugural forum participants – 77% people of color and 80% involved in federally funded research – established a leadership structure, formed workgroups for peer learning and resource development and pledged to gather again a year later in Washington DC.

    The 2nd National Community Partner Forum seeks to advance community-engaged research as a tool for eliminating health disparities by:

    * Deepening the knowledge and skills needed by community partners to successfully conduct community-engaged research, negotiate community-academic research partnerships and serve in national leadership roles;
    * Disseminating innovative work of community partners that others can learn from and build on;
    * Engaging in constructive dialogue between community partners and key stakeholders in academic, government and philanthropic sectors to foster mutual understanding and supportive action; and
    * Growing and deepening a national network of community partners that facilitates professional development and has a significant voice in decisions about research practice and policy


    Rahma Osman
    Community-Campus Partnerships for Health

    *Funding for the forum is made possible (in part) by 1R13MD007569-01 from the National Institute on Minority Health and Health Disparities, the Eunice Kennedy Shriver National Institute of Child Health & Human Development, and the National Institute of Environmental Health Sciences awarded to Community-Campus Partnerships for Health and the Center for Community Health Education Research and Service. The views expressed in written conference materials or publications and by speakers and moderators do not necessarily reflect the official policies of the Department of Health and Human Services; nor does mention by trade names, commercial practices, or organizations imply endorsement by the U.S. Government.

  14. I am late to "chime in" on this post. Yes, I am the Joleen Chambers that Regina Holliday refers to above as another "disinvited" engaged patient advocate. The sad truth is that PCORI has done nothing to engage with the issue that I brought forward and in the ensuing months tens of thousands of patients have been implanted with medical devices that will not receive any patient outcomes research that would inform future patients of which devices to select based upon science. Now I am attending jury trials of J&J DePuy Pinnacle Hips, J&J Ethicon surgical mesh, Boston Scientific surgical mesh and- perhaps soon-Bayer Essure permanent birth control. This is PREVENTABLE, irreversible, permanent and catastrophic harm and it is disgusting to know that there is research money available but that PCORI leaders are willfully ignoring an obvious need. I hate mazes. You saw it clearly, Regina.