Answering questions together

Last weekend I travelled to Washington DC to help create a new model for government-funded medical research. As a parent of a child with special needs who spends most of my time thinking about children with special needs, this 150-person patient summit was one of the most diverse groups of patient stakeholders I’d ever been part of. People representing arthritis, cancer, and kidney disease, people representing geriatric and pediatric issues, people whose medical issues came into their lives as a result of a tragic medical error or because of the body’s natural tendency to try new things.

We were invited there by an innovative organization, the Patient-Centered Outcomes Research Institute, or PCORI. Funded by the Affordable Care Act, PCORI aims to do research differently: to pair patients and researchers to answer questions that patients and families really care about. The idea of professionals doing work with patients instead of to or for them is reaching higher and higher levels of our nation’s health research priorities. In other words, this is a really big deal!

Even leveraging the collective lived experience of the attendees gathered by PCORI’s committed leadership, creating a research model that supports authentic partnership is going to be tough. Here are a few challenges I can see from my experience supporting patient-(and family)-professional partnerships on a number of levels and some ideas for addressing the challenges:

  • Challenge: Many professionals and patients don’t yet appreciate the innovation that patient-professional partnerships bring.

“We’re all patients,” is a common refrain from professionals when entering into collaboration with patients for the first time. That may be true, yet if that were enough, our health care system would have achieved a level of patient-centeredness that would render initiatives like PCORI unnecessary. Including people who are able work collaboratively while still retaining the unique vantage point of their own stakeholder group is critical to producing ideas innovative enough to handle the challenges our health care system is facing.

Suggestions: While PCORI’s current structure of supplying large grants (nearly $1m each) to a small number of projects has the opportunity to create some huge research results, funding many smaller projects in the form of micro-grants might do more to flood the field of research with thousands of opportunities to experience the “magic moments” of partnership innovation, encouraging real culture change.

  • Challenge: Throughout history, trying to insert a less powerful stakeholder group (patients) into the paradigm of the more powerful one (research) often results in paternalism and tokenism.

It takes a skilled, supported patient to not become acculturated to the professionals’ perspective when they’re sitting in their conference room or in their labs. Patients are often invited to partner and then sent signals that their ideas are unreasonable, off-topic or too aspirational—basically, that they “just don’t understand the reality of the situation,” or the professional’s own paradigm. Eventually, they become tokenized, or present so that the organization can claim credit for including consumers without actually changing.

Suggestions: PCORI must aggressively equalize the power dynamic from the outset. Make parity of participation (equal ratio of patients to all other stakeholders combined on a project) and compensation a requirement—including in their own leadership. Give higher scores to grant applications that offer patient-generated ideas and patient-driven projects. Teach the research community partnership skills. Putting patient groups in charge of awarding the funds would be a radical approach but could even out the power dynamic effectively.

  • Challenge: It’s easy to treat patient engagement as an ancillary function of whatever it is you’re trying to partner around.

When patients are invited into existing professional structures to partner, professionals often think that patients are the only ones who need to learn new things, that cultivating a healthy partnership is the job for a designated patient leader, or that partnering is a value deserving of resources only after the real work is done.

Suggestion: Instead of referring to “patient engagement,” frame the entire concept as “patient-professional partnership,” and make the partnering as important as other work. Accept that both sides will require training, new skills and new capacity to partner successfully. Select researchers and other stakeholders who demonstrate a commitment to partnership. Rather than assign a single person (usually a patient leader) to head up “patient engagement,” partner a patient and professional to model collaboration and manage this function. Similarly, partner patients and professionals as co-leaders throughout the organization to ensure that partnership stays central to the mission of the organization.

  • Challenge: Inadequate compensation creates circumstances in which only educated, engaged, connected patients are likely to participate.

Patients and caregivers are not often salaried employees. Participating in partnering often costs money: for childcare, additional nursing care for themselves or a family member or in lost income. When time is not valued through payment, only a lucky few have the means to participate. Also typical is that these patients’ contributions are devalued because the patients aren’t “regular people”—they’re too activated, navigate the system too well, or aren’t diverse enough.

Suggestion: PCORI can model transactions that will facilitate a more diverse participation by paying participants their time as well as expenses, and for participating in every role in their organization, including as grant reviewers and on their board and in leadership.

  • Challenge: The medical model paradigm favored by medical research, with its focus on body parts, diagnoses and disease labels, may be a source of conflict with patients.

Patients often take a radically more holistic perspective to medicine than researchers or even clinicians. Patients’ health care frame of reference is often a life course approach, a public health mindset and a medical home model blended into one, dismantling the silos of medicine, education, employment, transportation, housing, recreation and spirituality and blurring the lines between their own health and their families’ well-being.

Suggestion: Expand the scope of viable research questions to include non-diagnosis related questions, like identifying key activities of patient-professional partnership, the mechanisms of patient activation, care coordination, shared decision making, the impact of peer-to-peer (patient-to-patient and family-to-family) relationships, and the impact of social determinants on health. Fund projects agnostic to disease label to build a patient-centered research infrastructure: resources for patients on how to conduct research, access for patients on critical functions like an IRB and a venue for publishing, training on how to recruit their own researcher, and resources for all (not just PCORI) researchers on how to partner with patients.

PCORI leadership seems dedicated to doing this right. As a patient and family member, I recognize what a culture shift PCORI’s existence represents.

Do you have a research question that you’d like to submit to PCORI? Would you like to be a PCORI grant reviewer? Do you want to learn more about what PCORI does? Get involved and shape the future of medical research. Together we are better.

The Society for Participatory Medicine’s blog is also collecting  posts from other participants at last week’s event. Check them out.

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A gift from the messengers

Special needs fill nearly every thought and moment of my life lately. My mind has become a radio station that plays all advocacy with no commercial interruptions. Health care reform and medical home are in heavy rotation, along with the usual med refills and parent-teacher conference stuff. It’s not universally popular music like the Beatles; it’s complex, dissonant sound that requires effort and courage to listen to. Philip Glass, Rachmaninov and creepy crime drama soundscape rolled into one.

So when I found myself heading to Washington DC (yes, for a health care conference, PCORI), I decided to arrive a few hours early to unplug and reconnect with a passion from my life before special needs—art.

The visual arts have always played a sacred function in my life. Although I love words, I experience an entirely different connection with life when I react to image, line and color. Even when it’s challenging, it feels good.

It was a smart move. Strolling through the National Gallery of Art, I was transported through time and space. All thoughts of accountable care organizations and conference abstracts were arrested for a few moments. But the escape didn’t last long.

The museum’s collection includes a number of fantastic paintings depicting the Annunciation—the moment in the history of Christianity when a messenger angel arrives to tell Mary that she will give birth to Jesus. It’s such a pivotal, rich moment in Christian iconography that there are many versions of the scene in the Gallery’s collection.

The Annunciation is special to me, though not for reasons of conviction. I don’t have a particularly strong faith, more a comfort from stories told and retold throughout my childhood.

The reason the subject is special to me is because this angel, this messenger of peace, is named Gabriel. And so is my son, the one I write about in this blog.

Years ago, when I told my deeply religious aunt that we were going to call our son Gabriel, she replied matter-of-factly, “Gabriel. He will be your peace baby.” She was right. He is one of the most patient, loving, accepting, generous and forgiving people I have ever met.

National Gallery of Art, Washington DC

Even though Gabriel (the angel) is associated with peace, his arrival must have been quite terrifying. No one expects an angel to show up, do they? He’s got to calm people down so that they’ll listen to him. In most of the stories about him, the first words out of his mouth are

Do not be afraid.

So whenever I see any painting of the Annunciation, I first think about Gabriel (my son), his namesake. Then I think: Do not be afraid. And the juxtaposition of those two thoughts always stop me in my tracks.

Much of the emotion I have around parenting Gabriel is fear. Not all, but much. Fear of the future. Fear of not doing or being enough. Fear of doing it wrong. Fear of not feeling the right thing. Fear of being judged for all of it. Fear of never being able to work through the fear.

So there I am, on my little escapist jaunt, riveted by the image of this magnificent angel, appearing before a young woman going about her day. He extends to her a flower of purity, a lily, and reassures her: Do not be afraid.

Looking at one of the paintings, for one moment I am able get my arms around the fullness of my own parenting experience. The terror and the peace. The peace and the terror. It’s there, in oil on board, just right there in four square feet, inviting me to react, to feel it, to stay with it. So I do.

And then it’s gone. I move on, strolling once again. Through the Dutch masters, through the Impressionists, through the gift shop, back out on to the street, back to the conference, back to life. Both the escaping and the embracing of the fear have worked their magic, and even though the music of disability gets cranked back up again, this time it feels like it’s got a beat I might even be able to dance to. At least, I’m not afraid to try. Thank you Gabriel (both of you) for the message.