Patient experience has gained big momentum as a priority in healthcare these past few years. The discussion is no longer just about "patient engagement," after all. It's about putting the patient at the center of their care, giving them easy access to their data in the format they choose – and generally ensuring their interactions with technology, their caregivers and the health system at large are as helpful and humane as they can be.

Provider organizations and policymakers understand now, in a way that they didn't even a few years ago, that paying attention to the patient just makes sense. For hospitals and health systems, optimizing patient experience gives them a competitive advantage over those who don't. For agencies such as CMS and ONC, making patient access a priority offers new avenues to improve quality and control costs.

It must be gratifying then for the founders of the Society for Participatory Medicine to look back over the past decade of its existence and think about the ways the group may have helped change the conversation about the patient-provider relationship.

As SPM co-founder and Chairman Dr. Danny Sands has described it:

"For too long, both patients and healthcare professionals have thought of healthcare as a car wash, with the patient passively moving through the healthcare system car wash, getting health sprinkled on them, and coming out healthy. This lack of engagement results in dissatisfaction, high costs and poor quality care. We need to reimagine healthcare as an active collaboration between the patient and the healthcare professional."

Next week, the Society for Participatory Medicine will host its third annual day-long event as part of the HIMSS Connected Health Conference (October 15 at the Seaport World Trade Center in Boston).

Titled, Time 4 Change: Making Participatory Medicine Real, the theme of the event is "really about making this very practical," Sands tells Healthcare IT News. "How do we really apply participatory medicine in practice, both as a patient and a healthcare professional? Because there are two sides to this."

Among the presentations that day, a panel will discuss "missed connections" – how to improve care when attitudes on both sides of that equation don't necessarily align. Keynoter Maggie Breslin, director of The Patient Revolution, will show how to build a "movement for careful and kind patient care." A kidney donor and transplant recipient will both offer their perspectives on the value of clear communication during that medical journey. There will be a primer on how HL7's FHIR spec is connecting patients with their data. And SPM will unveil the group's manifesto, which was conceived by participants at its last annual meeting.

Empowered, engaged, equipped, enabled

Dave deBronkart – known more widely across the healthcare industry as ePatient Dave – says the Connected Health Event offers another validation of the hard work the Society for Participatory Medicine has been doing these past 10 years.

For those unfamiliar with his story: deBronkart, who was a patient or Dr. Sands, was diagnosed in January 2007 with advanced Stage IV, Grade 4 kidney cancer – median survival for which is just 24 weeks.

But beyond the great surgery and treatment he received at Beth Israel Deaconess Medical Center in Boston, and the advanced clinical trials in which he participated, ePatient Dave – a longtime technology enthusiast – also marshalled every online community resource he could – messageboards, group chats, blogging and more – to learn every possible detail about the disease and enlist other patients in his journey.

Less than a year after his diagnosis, he had beaten the cancer into remission and continued to heal.

The experience catapulted deBronkart to a new lifetime of advocacy and activism, and as one of the most visible proponents of patient empowerment – the "e" in his chosen moniker stands for "empowered, engaged, equipped and enabled" – a role he continues to perform with vigor today.

"What we are about is transforming – and we don't mean that in a generic bubble-headed, touchy-feely way – but really altering the culture of healthcare, so that patients are seen as active informed partners with their clinicians," said deBronkart. 

"And an essential thing about this transformation, to me, is making the case logically – making the case, through intelligent, informed well-educated people, physicians and health policy people and so on, that it's a mistake to view patients as dummies who couldn't understand the information if they had it. One of my aphorisms is that it's perverse to keep people in the dark and then call them ignorant."

To illustrate this, he pointed to a reported exchange between former Vice Presisent (and current presidential frontrunner) Joe Biden and Epic CEO Judy Faulkner, a couple years back, that got a lot of attention in certain corners of social media.

We have a right to OUR medical information, anytime, anywhere as it's our business @joebiden @erictopol https://t.co/fqLpC92FIn

— Neil Floch MD (@NeilFlochMD) August 3, 2017

"The eternal issue is well-meaning paternalism versus autonomy," deBronkart explained. "If we want to increase the total knowledge in the healthcare system, we can't do it by holding information back from people who want to see it."

That includes their right not to see it too, of course. But the patient should be in control, either way.

"Even during my cancer, there were some days where I just wanted to be taken care of," said deBronkhart. "I didn't want to know the test results, and so on. But the deep guiding revolutionary principle is, should patients have a vote in how much information they get to see? And that's what we argued for, what we are, what we work on."

And, over the past 10 years, SPM has been a key player in shaping the way these issues have evolved, and the understanding of patient rights has changed.

"It turned out to be fortuitous timing that we were formed just as HITECH was passed, and numerous of us were actively involved in the discussions around patient access under meaningful use," he said. "We made many trips to Washington and contributed numerous responses and comments on various proposed rules – including the new one."

By the "new one," of course, he's referring to the proposed regs from ONC around the 21st Century Cures Acts' info blocking and interoperability. The new provisions prioritize patient empowerement and easy, API-enabled access to data perhaps more than any other major set of rules from the agency.

National Coordinator for Health IT Dr. Donald Rucker has described ONC's goals as empowering patients with new tools to combat "asymmetry of information." The proposed rule "absolutely puts healthcare in a competitive place it hasn't been in 50 years," he has said.

"Today, much of American healthcare remains complex and opaque," Rucker told the Senate HELP Committee this year, urging them to allow the rules to be finalized as soon as is practicable.

"To the extent that this is delayed or prevented, the American public is not in charge of their healthcare, they're paying more for their care, they're not getting as good care as they could get, and fundamentally they're not in control of their care," Rucker said.

For deBronkart, that's as good an indication as any that the work done by the Society for Participatory Medicine over the past decade has been noted by the right people. And that perhaps these forthcoming rules – which have been described as definitional to the health information exchange and health IT space for the next five to 10 years – could help pave the way toward the future SPM has been aiming for since 2009.

"It seems to be, it really does," he said. "Now, I am not a lifelong D.C. policy person, and I have learned that sometimes things work out differently from what's on the surface. But having said that, HHS seems to be doing everything right. I don't know what's going on behind the scenes, but I'm happy about it."

Twitter: @MikeMiliardHITN
Email the writer: mike.miliard@himssmedia.com

Healthcare IT News is a publication of HIMSS Media.