Tag: Society for Participatory Medicine

The Doctors Who’ve Helped Patients Declare Their Independence


“A reform,” wrote a 19th-century British parliamentarian, “is a correction of abuses. A revolution is a transfer of power.”

As we celebrate the American Revolution, catalyzed by men who broke ranks with their peers to overthrow a power structure that seemed immutable, let’s also celebrate those physicians who broke with their peers and declared independence for American patients.

The British Empire believed it was exercising “benign colonialism.” Physicians, similarly, traditionally believed “that patients are only in need of caring custody,” observed psychiatrist Jay Katz in his 1984 book, The Silent World of Doctor and Patient. As a result, doctors thought it their moral duty to act as “rational agents” on the patient’s behalf.

The first spark to set that notion on fire came immediately after World War II with the publication of a book, The Common Sense Book of Baby and Child Care, that became a surprise best-seller. Dr. Benjamin McLane Spock, author and pediatrician, told parents that their common sense was often as reliable a guide as any doctor’s advice.

At the time, the American Medical Association’s Code of Medical Ethics advised physicians that “reasonable indulgence should be granted to the caprices of the sick.” Even though new moms were not ill, many pediatricians nonetheless deemed it entirely unreasonable for them to decide when to feed their babies. Instead, the doctors gave them given feeding schedules.

Spock, in contrast, reassured moms that centuries of human history showed they could decide for themselves when to feed their infant, doing so “when he seems hungry, irrespective of the hour.”

As I wrote in a history of participatory medicine, as those babies grew into adulthood, they “would use legal, economic and political pressure to undermine a medical culture that genuinely believed sharing too much information could be harmful.”

Along that journey, however, patients would acquire crucial help from doctors with the imagination and courage to think and to act outside the existing paradigm.

It wasn’t a quick process. As with the American Revolution, the abuses had to accumulate and resistance had to build. In 1970, a group of Boston feminists frustrated by a system that told them to listen to their doctor and not ask questions published a booklet entitled Women and Their Bodies. One year later, a court decision resulting from a malpractice case required physicians for the first time to specifically disclose the full risks of a procedure in language the patient could understand. A year after that, in 1973, what had become the Boston Women’s Health Collective published Our Bodies, Ourselves. The book has sold millions of copies.

Also in 1973, the American Hospital Association, facing the threat of Congressional action, adopted a “patient bill of rights” that contained such guarantees as patients having the right to know the names of all the physicians treating them!

Meanwhile, a handful of doctors started chipping away at the medical pedestal, with research uncovering common abuses of power like unnecessary tonsillectomies and hysterectomies. John Wennberg, working with colleagues who deployed nascent computer capabilities, demonstrated enormous variation in even the everyday practice of doctors in the same area seeing the same kind of patients. The “caprices” of judgment, it seemed, were not just a patient problem.

Peer-reviewed medical journals rejected Wennberg’s first article. The university where he worked pushed him to find a different employer. Physician colleagues shunned him. But as policymakers’ concern over soaring medical costs grew, Wennberg’s work went mainstream.

“Inevitably, once you start down the variation path and ask which rate is right, you come up against who’s making the decision and whose preferences are being reflected,” Wennberg later said. “That’s where the revolutionary aspects of what we’re doing really are.”

Following that logic, Wennberg and a fellow physician, Albert G. Mulley, Jr. – who had experienced the impact of practice variation when trying to treat his severe back pain – in 1989 formed the Foundation for Informed Medical Decision Making. Its mission was to develop and disseminate video programs enabling patients to become partners in their care.

It was Wennberg who recommended Katz’s book to me, with its extraordinary statements about doctor “fantasies” of “authoritarian control” and its blunt accusation that doctor’s reluctance to involve patients in jointly thinking about care choices constitutes psychological “abandonment.”

Like Wennberg, Paul Ellwood, who’d coined the term “health maintenance organization,” also tried to put shared decision-making into practice. In 1988, he called for adoption of “a technology of patient experience.” In 1995, he founded the Foundation for Accountability (FACCT), with tools such as “CompareYourCare” to help patients play a more active role in medical decisions.

Meanwhile, Harvey Picker, a successful businessman who said he wanted the health care system to treat patients as persons, not as “imbeciles or inventory,” joined with the Commonwealth Fund to support a group of researchers who promised to promote what Tom Delbanco, the lead physician, called “patient-centered care.” The group’s 1993 book, Through the Patient’s Eyes, helped popularize the concept, which a 2001 report by Institute of Medicine formally designated as one of six aims for the health care system

It was Delbanco who with colleagues in the first decade of the 21st century founded the “open notes” movement to give patients the right to see the doctor’s notes that were still a hidden part of the electronic health record. That push eventually led to legislation and regulations giving patients full access to all their EHR information.

But, of course, by then there was another doctor the public was increasingly turning to: “Dr. Google,” also known as “the Internet.” In 1996, Dr. Tom Ferguson, who had been medical editor of the Whole Earth Catalog, wrote a book entitled, Health Online: How to Find Health information, Support Groups, and Self-Help Communities in Cyberspace. Three years after his death in 2006, a group of physicians and patients would found the Society for Participatory Medicine, following the principles of an individual CNN would call the “George Washington of the empowered patient movement.”

None of these physician revolutionaries acted in a vacuum. While all faced resistance, they also had support from colleagues, physicians and non-physicians alike. Eventually, they were reinforced by patient activism, public opinion, legal requirements and, at a glacial pace, changes in the culture of medicine. Those changes, in turn, came about because of the work of physicians like Donald Berwick, Paul Batalden, Leana Wen, Victor Montori, Danny Sands and many others.

Still, it is those physicians who over the years repeatedly acted to free patients from “authoritarian control” – even if their language was more diplomatic – that blazed the path.

Michael L. Millenson is president of Health Quality Advisors LLC, and author of the classic Demanding Medical Excellence. He can be reached at michael@healthqualityadvisors.

The Society for Participatory Medicine Presents a Creative Learning Exchange: Community Health Access and Equity 

I’ve been on the board of the Society for Participatory Medicine for a few years and we are kicking off a series of “Creative Learning Events”. There’ll be two in the balance of 2022 and hopefully one a quarter thereafter. Should be great in-person AND online exchanges about getting participatory medicine into the hear of the health care system. Here’s details on the first one, October 20, in Boston and everywhere else!–Matthew Holt

Participatory Medicine is a movement in which patients, caregivers and healthcare professionals actively collaborate and encourage one another as full partners in healthcare. 

The Society for Participatory Medicine with the support of our sponsor NRC Health Presents A Creative Learning Exchange(CLE): Community Health Access and Equity

Date: October 20, 2022 Time: 12:00 noon – 4:00pm (Lunch Is Included for In-Person)

Location: Brown Advisory, 100 High Street, 9th Floor, Boston, MA 02110

For more details and to REGISTER TODAY click here.

The Society for Participatory Medicine believes that the culture of healthcare is not benefiting everyone equally and needs to change. And healthcare won’t get better until healthcare culture gets better. We want to drive this change by enabling collaboration, education, information sharing, and communication among patients, caregivers, and health care professionals. Join the movement! 

This Creative Learning Exchange, in-person and online hybrid event, will be highly interactive and participatory, using a ‘Neighbors at Each Table’ approach to engaging you in facilitated discussion and brainstorming. 

These discussions will focus on applying the Participatory Medicine Manifesto behaviors in culturally and racially diverse communities to enable access and equity in care. Your ideas, insights and solutions that emerge will be curated by SPM to build a toolkit of participatory medicine guidelines. These will be shared with you and through SPM’s social networks, website and blog. 

For more details and to REGISTER TODAY click here.

Thank you to our series sponsor NRC Health. Thanks to Massachusetts General Hospital Equity & Community Health for sponsoring the meal. Thanks for Brown Advisory for proving the venue & AV.

A Patient’s View of the Cures Regulations


How should we react to 1,718 pages of new regulation? Let’s start by stipulating the White House and HHS perspective

“Taken together, these reforms will deliver on the promise to put patients at their center of their own health care — you are empowered with control over your own health care choices.” 

Next, let’s stipulate the patient perspective via this video lovingly assembled by e-Patient Dave, Morgan Gleason, and the folks at the Society for Participatory Medicine. In less than 3 minutes, there are 15 patient stories, each with a slightly different take on success.

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Health in 2 Point 00 Episode 55

We missed our chance to do a Happy Hour Health in 2 Point 00 at Connected Health in Boston (but let’s be honest, those are usually not the most cogent pieces of information in health and technology). Join Jessica DaMassa as she gets my take on the conference starting with #S4PM’s event, where I met some incredible people, including Patty Brennan and Doug Lindsey, who spoke about their experiences with health care knowledge (deploying it and creating it!). Danny Sands and e-Patient Dave even had quite the musical performance there, singing about e-Patient blues. Susannah Fox, Don Berwick, Don Norman were at Connected Health 18, presenting their new initiative, L.A.U.N.C.H. I even interviewed Jesse Ehrenfeld, the chair elect of AMA, and his spoke to him about the digital health play book that the AMA just released. A company to take note of that wasn’t at #CHC is Devoted Health, who just raised $300m. Devoted is looking at building a better Medicare Advantage “payvider” for seniors. If you are interested in Guild Serendipity’s conference which empowers and engages female CEOs and Cofounders, come join us in San Francisco October 26-27, is sponsoring the women’s health houses – Matthew Holt

Health Care Needs Its Rosa Parks Moment

On Wednesday, October 25, 2017 I was at the inaugural Society for Participatory Medicine conference. It was a fantastic day and the ending keynote was the superb Shannon Brownlee. It was great to catch up with her and I’m grateful that she agreed to let THCB publish her speech. Settle back with a cup of coffee (or as it’s Thanksgiving, perhaps something stronger), and enjoy–Matthew Holt

George Burns once said, the secret to a good sermon is to have a good beginning and a good ending—and to have the two as close together as possible. I think the same is true of final keynotes after a fantastic conference. So I will do my best to begin and end well, and keep the middle to a minimum.

I have two main goals today. First, I want to praise the work you are doing, and set it into a wider context of the radical transformation of health care that has to happen if we want to achieve a system that is accountable to patients and communities, affordable, effective — and universal: everybody in, nobody out.

My second goal is to recruit you. I’m the co-founder of the Right Care Alliance, which is a grassroots movement of patients, doctors, nurses, community organizers dedicated to bringing about a better health system.  We have 11 councils and chapters formed or forming in half a dozen cities. I would like nothing more than at the end of this talk, for every one of you to go to and sign up.

But first, I want to tell you a bit about why I’m here and what radicalized me. My father, Mick Brownlee, died three years ago this Thanksgiving, and through his various ailments over the course of the previous 30 years, I’ve seen the best of medicine, and the worst.

My father was a sculptor and a scholar, but he was also a stoic, so when he began suffering debilitating headaches in his early 50s, he ignored them, until my stepmother saw him stagger and fall against a wall in the kitchen, clutching his head. She took him to the local emergency room, at a small community hospital in eastern Oregon. This was the 1970s, and the hospital had just bought a new fangled machine—a CT scanner, which showed a mass just behind his left ear. It would turn out to be a very slow growing cancer, a meningioma, that was successfully removed, thanks to the wonders of CT and brain surgery. What a miracle!

Fast forward 15 years, and Mick was prescribed a statin drug for his slightly elevated cholesterol. One day, he was fine. The next he wasn’t, not because his cholesterol had changed, but the cutoff point for statin recommendations had been lowered. Not long after Mick began taking the statin, he began feeling tired and suffering mild chest pain, which was written of as angina. What we didn’t know at the time was the statin was causing his body to destroy his muscles, a side effect called rhabdomyolysis. Even his doctor didn’t recognize his symptoms, because back then, the drug companies hid how often patients suffered this side effect.

The statin caught up with Mick at an exhibit in Seattle of Chinese bronzes, ancient bells and other sculptures that my father had been studying in art books his whole career. Halfway through the exhibit, he told my brother to take him home; he was too tired to take another step.

Three days later, he was in the hospital on dialysis. The rhabdomyolysis had finally begun to destroy his kidneys. Three weeks later, he was sent home alive with one kidney barely functional. Soon his health would begin to deteriorate at a steady pace.Continue reading…

The #CommonWell Open Discussion Forum

The EHR vendor lock-in business model is under attack by frustrated physicians and patients and the reality that health care cost and quality are more opaque than ever. Doug Fridsma of ONC politely talks of the need to move from vertical integration of health care services to horizontal integration where patients can choose with their feet. Farzad Mostashari calls for moral behavior and price transparency. The Society for Participatory Medicine says “Gimme My DAM Data” and Patient Privacy Rights asks HHS to allow physicians to prescribe health IT without interference from the institution or the vendor.

The vendors’ response is a charm offensive called CommonWell Health Alliance with a pastel .org website. The website is presumably the official source of information about CommonWell and it lays out the members’ strategy to preserve the vendor lock-in business model for a few $Billion more. Ok, maybe more than a few.

The core of the CommonWell strategy is to avoid giving patients their data in a timely and convenient way.

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Patient Politics: the PCORI Puzzle

The new Patient-Centered Outcomes Research Institute (PCORI) has been asking different stakeholders about the most important issues to address with the hundreds of millions of dollars the quasi-governmental group will shortly be doling out in grants. Not surprisingly, the stakeholders have been more than happy to respond.

PCORI’s most recent day of dialogue, which I attended as a representative of the Society for Participatory Medicine (SPM), was characterized by genteel civility and a big question mark: “Is PCORI serious about transforming health care?” When I asked directly, I didn’t get much of an answer. The reason, I suspect, goes to PCORI’s origins. It is the offspring of a shotgun marriage between goo-goos and pinky-ringers, and no one is quite sure yet what this child will be once it grows up.

Let me pause here a moment to parse the political shorthand. “Goo-goos” are “good government” types, the kind of folks who trumpet the need for transparency in government or better public transit. Goo-goos, seeing the half trillion dollars or so of waste in U.S. health care system, called for a new national organization to carry out comparative effectiveness research in order to help Americans get the most value for our money.

The goo-goos pointed out that our current regulatory structure is designed to ensure that treatments are safe and effective, not compare them. Nor does the private sector have much incentive to pay for comparative studies that may undermine products currently selling quite nicely, thank you.

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Will “Partnership” Meeting Propel Mass Movement?

Is participatory medicine poised to become a mass movement? A weekend gathering of patient activists and supporters at a “Partnership with Patients” conference this past weekend offered some important clues about opportunities and obstacles.

The meeting was conceived and created in a matter of weeks by artist and activist Regina Holiday, with a little help from a lot of friends and an offer of a casino-turned-corporate-meeting-center by Cerner Corp. in Kansas City. But this meeting was unusual for reasons other than location. It was not patients protesting the high cost of care or barriers to access or the slow progress of research into their disease. Instead, they were trying to transform the way doctors and others throughout the health care system relate to every patient with every disease.

What was even more unusual, perhaps even unique in the history of medicine, is that they were joined in partnership by health care professionals – doctors, nurses, information technology specialists, medical communicators and others. The focus was on constructing something new, not just complaining about the old.

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