World Health Organisation Headquarters

Learning about Patient and Family Engagement at WHO Geneva

I skipped breakfast and arrived a good half-hour earlier than the scheduled start time, not wanting to risk being late for my first WHO Expert Consultation.  When I had received the invitation to participate in developing a framework for Patient and Family engagement several weeks ago, I remember feeling honored.  I was excited by the prospect of making a contribution at a global level and developing new relationships that could help our hospital continue along our journey of improving safety and transparency  (see my earlier blog posts on the start of our safety journey and on disclosing our cesarean section rate).  So there I was, in Geneva, at the famed, World Health Organization, waiting for the program to begin at 8:30 hours on 27-October-2014.


“I work at Brigham and Women’s in Boston, a Harvard University teaching hospital” said Ronen Rozenblum, “And I am at Johns Hopkins” said Hanan Aboumatar, two of the other early arrivals in Salle D on level 7 of the Main Building.  As luck would have it I ended up sitting between these two true experts in the field who were doing projects funded by the Gordon and Betty Moore Foundation(GBMF), co-sponsors of this consultation.


The meeting kicked off with Ed Kelly, Sir Liam Donaldson, and Dominick Frosch speaking.  The first two I had known about earlier, and both were predictably outstanding, but Dominick – the person leading this initiative in the Moore Foundation – was new to me.  He struck me as a person with great insight who was so articulate that every sentence he spoke seemed worth tweeting!  Kristin Carman, along with Dominick, presented the Patient and Family Engagement Roadmap (PFEroadmap), an action-oriented guide “targeted to those on the fence”.  Dominick pointed out that while “principles of PFE are global, implementation has to be local” and Kristin stressed the importance of pairing patients with clinicians to get clinician buy-in for change.  Their presentation provided us with a concise model for thinking about engagement along the dimensions of levels of engagement (direct care, organizational design and governance, and policy making) and continuum of engagement (consultation, involvement, and partnership and shared leadership).


Nittita Prasopa-Plaizier, the project manager for this consultation, spoke about the interesting variation in the attitudes of patients – we learnt that many Asian patients don’t want ‘partnership’ unlike in the West!  Vivian Lin confessed that it was “much easier to talk about what than how” while Hernan Montenegro reminded us that “we have to move beyond patients… to keeping people healthy”.  Neelam Dhingra-Kumar, the new coordinator for Patient Safety and Quality Improvement at the WHO, reminded us that in many parts of the world simply getting informed consent would be a step forward.  June Bolger, an articulate healthcare leader from Ireland pointed out the importance of clarifying expectations and responsibilities before asking about patient satisfaction.  Angela Coulter from the UK spoke about the need for changing the mindset from “we’ll solve your problems… to we’ll help you solve your problems.”  Casey Quinlan, a cancer survivor and journalist representing the patient perspective, reminded us that “people served by healthcare should be involved from the beginning of redesign.”


Soon it was time for us to break up into small groups and I became part of the group discussing creating a supportive environment for meaningful and effective engagement.   As I heard the various viewpoints, what struck me is that each leader and organization would have to find their own path, but connecting with others who could provide guidance or just support could be very useful.  The first day ended with Dominick recounting that when his eye exam showed that he was free of any signs of retinopathy, 23 years after being diagnosed with type 1 diabetes, his doctor said “You must be really good at following orders!”  Dominick reminded us that the health “system responsibility should also be to acknowledge when the patient is doing well and to empower them.”

Later in the evening we caught the bus to Rive and headed over to La Brasserie Genevoise for drinks and dinner.  Here I spoke with Manvir Jesudasan, a renowned radio jock in Malaysia who became interested in patient safety and engagement after being diagnosed with end-stage renal failure and undergoing a kidney transplant.  And with Tonny Tumwesigye who was a leader in a network of faith-based hospitals in Uganda, and Nuria Toro Polanco who was from the Basque Country in Spain and had recently started working at the WHO.   It was great to share experiences, though I’m afraid, as usual, I did more talking than listening.


Day 2 of the consultation was mostly presentations from the invited experts.   Densie Klavano of Canada, Kadar Marikar of Malaysia and Piyawan Limpunyalret of Thailand described their accomplishments and challenges in the field.   All presentations were outstanding, but one was simply mind blowing – Jonas Gonseth from Ecuador related how he took over an ailing public hospital in 2012 as “Jonas the fifth” – the fifth manager in twelve months, and within two years transformed the place with patient and community involvement.  I wouldn’t be surprised if there is a book or even a film on his feat in the future!


Susan Frampton of Planetree reminded us that how we treat our staff trickles down to how staff treats patients and that organizations wanting to go down the route of PFE needed to make a commitment to human relations and communications skills training for their staff.  Susan said that it wasn’t enough to adhere to the Hippocratic oath of doing no harm and that providers must strive to provide the most compassionate care possible.

Sue Sheridan of Patient-Centered Outcomes Research Institute (PCORI) reminded us of Google’s principle – “Focus on the user and all else will follow” and how PCORI was funding research in which “patients plan, conduct and disseminate the research along with the researchers.”   Hanan shared her observation that utilizing patient feedback in the form of stories and data on a regular basis with providers at the bedside was critical for improvement.   Rachel Goodens, a consultant involved with the African Partnership for Patient Safety, said that perhaps community engagement should be made part of what hospitals are already doing rather than an add-on.  Ed Kelly concluded that now there was sufficient evidence that PFE was not something that was just nice to have but was something that improved health outcomes.  Sir Liam Donaldson summarized the meeting with six arguments in favor of PFE including lower harm, better research, and reconnecting professionals to the passion that originally brought them into healthcare.


The two days flew and soon we were on the roof of the main building for a group photo.  The goal of the Global Patient and Family Engagement (GPFE) consultation was to “put together a document that serves as a jumping off point for pilot projects across the world.”  Having participated in the consultation, for me the document has already done more – it has inspired and energized!  I wish I could make a bold declaration of adopting an ambitious goal that we will achieve in our hospital.  But I’m tempered by the reality of our limited bandwidth and several competing priorities.  What I can say is that we are committed to increasing patient and family engagement and in time hope to have valuable learnings to share with others in our health system and beyond.


To see a summary of the event’s tweets click here.