Proposed rule change will *reverse* data sharing requirements; Regina & Farzad call for “National Day of Action” to fight back
Friday evening I got a tweet from SPM member Sherry Reynolds about something that had just happened in Washington. Today it unfolded. (Don’t miss her comment, too, about the history of this issue and her role in it.)
Change can provoke upset. Technological change can be hard, especially in an industry that’s not known for its IT leadership. And social change can be upsetting to the point of the establishment fighting back … as people in the civil rights movement learned. (The recent movie “Selma” makes all this fresh in many people’s minds.)
To some observers of health IT, it appears the establishment is indeed fighting back – actively, through its lobbyists – to reverse the progress patient activists have made. And it looks like things are coming to a head, right now, at the huge HIMSS health IT conference just starting in Chicago.
First, watch this two minute hallway video of SPM member Regina Holliday Sunday night, responding to that Friday news item.
Many of us in the Society for Participatory Medicine have long noted that what we’re up to here is nothing less than full-bore culture change. In my own speeches I often note that culture is the set of shared beliefs about what’s possible and expectations about what’s appropriate behavior. And culture change ain’t easy, no matter how great your strategy is: many change agents have quoted the famous management consultant Peter Drucker’s line, “Culture eats strategy for breakfast.” (Google the phrase to see how often it’s cited.)
Predictably, arguments and even spitting contests break out about this: is change happening, or not? Is anyone doing anything that will make any difference, or not? Today one such dispute has shown up in our Journal of Participatory Medicine (JoPM): SPM board member Peter Elias MD has taken to task Paul Levy, the former CEO of Beth Israel Deaconess in Boston, who is very patient-oriented (but not a member of SPM). In January Paul posted Lightning Goes to Ground on his blog, asserting that something big is missing in patients’ efforts to truly change healthcare:
SPM survey in Times Square: “Americans believe their medical data should be shared with their providers”
National Survey Also Shows 87% Think Health Information Exchange Should be Free
First paragraph updated next day
In case you missed it last month, there was an unprecedented, huge moment in SPM’s history – we collaborated in a national survey of Americans’ views and wants regarding something we at SPM hold dear: getting doctors to make full use of our chart data, by sharing it with other providers. SPM board member Donna Cryer @DCPatient and Danny Sands @DrDannySands collaborated with survey firm ORC International, and boy do the results say it: Americans want their medical data to be put to good use!
Back then we published a press release (below). Our survey partner ORC International also produced a gorgeous infographic (below), and hot diggety, it was picked up and published on the jumbotron in Times Square! (Photo, left. We also posted it on the SPM site, but haven’t blogged about it til now.)
There are some pretty stunning numbers in the survey results, and some pretty potent quotes. I’ll highlight some of them below.
Enjoy – and tell friends and tell your legislators! (How often does a legislator see survey numbers like 75% and 87%??) Tell them: current business practices and federal policy are holding back what Americans overwhelmingly want:
Let my data go!
The survey results and press release:
SPM member/legend Regina Holliday, a powerful force for grass roots empowerment and creator of The Walking Gallery of Healthcare, got whooping cough (pertussis) this winter, despite having been vaccinated just a few years earlier. The UK magazine Pharma Times interviewed her for their inside-back-cover feature in the current issue.
She details how she took advantage of internet resources to inform herself, including finding whoopingcough.net, a site by retired UK family doctor Doug Jenkins, who tweets as @WhoopingCoughDr. (It’s a hand-made 1990s style site, but click the “Enter” link and explore – what a do-it-yourself kit, for professionals and patients alike!)
Note some important specifics of Regina’s story:
- She doesn’t use the internet instead of doctors – she uses it to supplement them.
- She doesn’t expect her providers to do everything – as a responsible citizen, she does what she can to pitch in herself, to share the work.
- She shared what she learned online with her doctor, who didn’t tell her to “stop that.” (Yes, the world is changing.)
- Then, having discovered that despite her vaccination she had it, she proceeded to use social media to spread the word, including notifying the CDC:
Participatory medicine and healthcare system transparency warrior Cyndy Nayer put this up on her blog this week, and we’re re-posting it here because it’s a message that’s got to spread.
A personal account of a transaction that went very badly, and rules of Health Reform were not followed
In my surveys and seminars, physicians tell me they want responsible, accountable patients. I’m calm, I’m rational, I’m doing my best to be proactive and ensure they get their money. But I can’t promise an open-ended checkbook.
Accountable Care and associated transparency have not made it to Florida, at least not in this physician’s office.
I made an appt with an ENT (ear nose and throat doctor) for ear wax. When I get there, I need to fill out 5 papers (EMRanyone??), and I’m told there is a $35.00 copay, which she says I can pay on my way out.
The 5 page HIPAA form says they can share my info with other providers who are trying to collect fees. But you only learn this, among other clauses, if you read the form that is tacked on the wall–it’s not in the form the patient signs.
Providing apropriate health care is a challenge in remote areas of developing and developed nations, where skilled professional health personnel and facilities are limited. However, e-health, with tools to redesign care models around the common needs of discrete patient populations, is saving lives every day, and serving as a spring-board for further progress.
I spoke recently at the fifty-ninth session of the Commission on the Status of Women at the United Nations, Symposium, sponsored by the Global Alliance for Women’s Health. The main focus of the session was tied to the Beijing Declaration and Platform for Action and two of the most compelling Millennium Development Goals (MDGs), incorporated in that report which seek specifically to reduce maternal and infant deaths by 2015.
The Bejing+20 report, based on a 64-country survey, demonstrates, as never before, the vital role e-health and information and communication technologies (ICTs) play in achieving the current challenges: gender equality, empowerment of women, and the improved health of women and children.
Patients have a unique expertise that is often overlooked. The day-to-day life experiences of a patient and the wisdom they gain as they navigate their healthcare journey are invaluable. In fact, that expertise is a key driver in helping to shape the future of healthcare. However, that expertise is often missing at key medical conferences alongside clinicians, advocates, policy makers, administrators, and other key healthcare sectors. During a time when managing the costs of care can place great burden on patients, the added expenses of having their voices heard alongside others can be difficult to manage.
A few buzz words in healthcare most of us have used or heard recently include:
Patient Engagement. Patient Voices. Patient Partnerships.
How do we move these terms from theory and one-off activities to practice? How do we ensure that the “key experts” –those navigating the healthcare system that we’ve spent billions on trying to fix—are alongside us at key meetings paving the path forward?
In 2012, the Society for Participatory Medicine created a patient travel scholarship fund to help patients attend the inaugural Cinderblocks conference in Kansas City. Ten patients were awarded travel scholarships thanks to a crowd-funding campaign run by Regina Holliday and gracious donors that recognized the importance of patient participation. Our mission at the Society for Participatory Medicine is to continue that work, but we need your help!
Cinderblocks 2 will be held on June 4-6, 2015 in Grantsville, MD and organized by the most passionate advocate I know, Ms. Regina Holliday (aka Rosa Parks of Healthcare). Doctors 2.0 & You will be held in parallel on June 4-5, 2015 in Paris, France, and organized by the lovely Ms. Denise Silber, a healthcare social media influencer. Our goal is to ensure patients can participate at both conferences through patient travel scholarships. Awardees will share a blog post on their experiences at these conferences through the lens of a patient.
Lucien Engelen has also put a Patients Included spotlight on conferences that have embraced patients as partners. Let’s work together to make this a standard practice, as opposed to a deviation from the norm.
- If you are a patient and would like to be considered for a scholarship to either conference, please submit a blog post no later than March 31, 2015. Details here.
- If you are a gracious donor and would like to contribute to SPM’s Patient Travel Scholarship, please click here.
Let’s put theory into action and find a way to truly partner with patients!
In a study report hitting the digital wires on Health Affairs at 4pm Eastern time today (March 2, 2015), a group of researchers are reporting the results of a longitudinal study of Patient Activation Measure (PAM) impact on cost and outcome metrics from a large study cohort. The results show that activated, engaged patients have better outcomes, at lower costs, than do their less-activated peers. For expert/savvy patients and other policy wonks, this might seem a little like a “dispatch from the desk of Captain Obvious,” but the more research-study bricks built into the wall of what ePatient Dave calls “people who are informed better, perform better,” … well, this is a wheelbarrow full of bricks.
We’d bet good money that anyone who identifies as an e-patient has been led to believe that their desire to participate actively in their medical care marks them as a “demanding patient.” The perception of demanding patients is that they’re behaving like spoiled divas at a medi-spa, with their demands driving up incidence of unnecessary or inappropriate care.
“In this issue of JAMA Oncology, Gogineni and colleagues report on their empirical inquiry into patient demands, a nemesis that proves to be more mythical than real. The study hypothesis—that patient demands for treatments and scans drove unnecessary costs—was spectacularly unconfirmed when using data collected from physicians themselves. Only 8% of the patient-physician encounters at 3 cancer centers in Philadelphia involved a patient “demand,” and the majority of those “demands” were viewed by the physician as “clinically appropriate.” Suddenly, the demanding cancer patient looks less like a budget buster and more like an urban myth.”
Dr. Donald Lindberg, long-time director of the National Library of Medicine, is surely the single most-quoted authority from “Doc Tom” Ferguson’s e-Patient White Paper. In almost every speech I’ve given in the past five years I’ve used Doc Tom’s quote of Dr. Lindberg in the White Paper:
“If I read and memorized two medical journal articles every night, by the end of a year I’d be 400 years behind.”
It’s a hoot to see people’s faces as this sinks in: “Holy crap, it’s not realistic to expect doctors to know everything!” The power of this realization is that if a patient shows up with an article the doc hasn’t seen, it’s no insult to the clinician. Instead, the door becomes open to partnership – to participatory medicine.
To have this statement come from a highly respected member of the establishment has been of transformational importance in our work. Now, Dr. Lindberg is retiring at the end of March, and the Library has issued a call for public comment: