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Announcement: SPM to advise ACP’s new Center for Patient Partnership in Healthcare

SPM co-founder and co-chair Dr. Danny Sands is appointed our first representative

On Friday the following notice was distributed to members of our Society for Participatory Medicine. What a wonderful sign of medicine’s growing acceptance of the importance of patient-clinician partnership – and what a significant recognition of SPM as emblematic of this crucial collaboration we call participatory medicine.

Dr. Danny SandsSociety for Participatory Medicine co-founder and Board co-Chair Daniel Z. Sands, MD, MPH, has been appointed as the SPM representative to a newly formed Advisory Board of the Center for Patient Partnership in Healthcare (CPPH), recently established by the American College of Physicians (ACP).

ACP logoCPPH is guided by an Advisory Board for Patient Partnership in Healthcare chaired by Phyllis Guze, MD, MACP  past chair of ACP’s Board of Regents. The Advisory Board includes representatives from patient organizations along with ACP member physicians and other multidisciplinary clinicians. Their goal is to develop programs and offer resources that promote authentic partnerships between patients and healthcare professionals to enhance quality, safety and the experience of care.

The Society for Participatory Medicine is a 501(c)(3) not-for-profit membership organization that seeks to encourage mutual collaboration among patients, health professionals, caregivers and others across the continuum of care. The Society provides a forum for its members to interact and exchange ideas on health issues, influence policy, advocate, conduct research, educate patients, caregivers, and health care professionals in best practices in participatory medicine. SPM fosters initiatives that impact the quality, efficacy, safety and viability of healthcare policy and practice.

The American College of Physicians is the largest medical specialty organization and the second-largest physician group in the United States. ACP members include 141,000 internal medicine physicians (internists), related subspecialists, and medical students. Internal medicine physicians are specialists who apply scientific knowledge and clinical expertise to the diagnosis, treatment, and compassionate care of adults across the spectrum from health to complex illness.

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Patient Advocates Fight for Access to Medical Data: ‘It’s a Matter of Life and Death’ (KQED)

Screen capture of KQED postThe advo-cacy of individual SPM members is gaining increasing visibility in the mainstream media, driving home the human impact of policies that help – or don’t help – patients be active contributors to their families’ health and care. This is excruciatingly important as America debates the proposed rule changes for patient data access mentioned here last month.

An important new post yesterday by @ChristinaFarr on the KQED Science blog, Patient Advocates Fight for Access to Medical Data: ‘It’s a Matter of Life and Death’, starts with the story of Julia Hallissy (right) and her daughter, Julia Hallissyin which her active engagement with the chart found many mistakes and missed facts. Our best-known member, Regina Holliday, is quoted as saying “This is a slap in the face of patient rights,” and is featured in the post’s cover photo and another picture.

Access to our records, and their easy flow from doctor to doctor, can literally be a matter of life and death, yet a report sent to Congress last month says some players are “knowingly interfering” with their transfer. Government policy must forbid this: it is a source of harm. And policy must encourage the flow of our data, including teaching providers how to teach their patients. Clearly there is value when patients help manage the data; we must enable it, even if it’s hard to do. Please, vendors – improve the software – make it easier for providers to help patients do it.

And hey, vendors – if your system is good at it (and has higher patient participation), brag about it! Shout about your achievements! This is important.

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Guest post by Annette McKinnon: Power Equality: Why Is My Silo Two Miles Away?

This blog welcomes guest posts from SPM members on relevant topics. This is a blog post by Annette McKinnon, an e-patient in Canada. Annette is an enthusiastic advocate for patient inclusion in research and healthcare decision making. She has had rheumatoid arthritisAnnetteMcKinnonfor the past 30 years, and has a background in market research. She attended the Stanford Medicine X Conference in 2014 as an ePatient Scholar, and in 2013 and 2014 was moderator of the Reaching Out With Arthritis Research (#eROAR) tweetchat for the Arthritis Patient Advisory Board of ARC (Arthritis Research Canada).

She sits on the Board of Directors for the Sjogren’s Society of Canada, and is a volunteer Health Mentor for the Centre For Interprofessional Education in Ontario, a member of Patient Partners in Arthritis and the Canadian Arthritis Patient Alliance. She tweets as @anetto and blogs about health related issues at “Your Gold Watch – Rheutired

Today I watched a youtube video of the Institute of Health Services and Policy Research (IHSPR) Policy Rounds – Improving Care of Multiple Chronic Conditions The webinar is from March 26, 2014. I found out that in Ontario chronic disease accounted for at least 65% of direct health care costs in 2010/11 and it would not surprise me if that number is typical across Canada. In the US that percentage might not be the same since the health care system is different.

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Patient POV: Seasons Change

This came over my transom from a friend who works with a major medical school’s digital publishing group. Seems both relevant, and high impact. – Casey 

Seasons Change

by Candace Barnes


When I left for the hospital

The night was bitter cold,

And snow lay on the ground.

I know of weather what I’m told;

There is no weather here.


My stay is longer than expected

And day folds into day.

Time passes slowly, hour by hour,

Less real the longer I stay.

But still the time marches on.


Coming home from the hospital,

The chill was gone from the air.

The snow has melted all away;

The yard is dotted with crocus here and there

And daffodils push through the ground.


While I was ill the seasons changed.

I left in dead winter, came home in early spring.

Just as the seasons chase one another,

My illness waxes and wanes.

If I am patient, spring changes come again.

Candace Barnes has been writing poetry since she was a child, finding solace in putting her private struggles into poetry. Barnes is the author of two books, one of which, Journey from Darkness, is an anthology of her poetry. She has lived in northern New Jersey for over 40 years, and has been diagnosed with chronic intestinal pseudo obstruction for 12 years. She is TPN (Total Parenteral Nutrition) reliant for the past five years, and enjoys reading and writing and getting out with her friends when she can.



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Good Medicine: Choosing What to Do and What Not to Do.

The Choosing Wisely® campaign was launched in 2012 by the ABIM Foundation to encourage patients and clinicians to think about the tests and treatment choices they are implementing or requesting, and to avoid those tests that have proven to be overused and inappropriate.

Over the past three years, this initiative has engaged nearly 100 national and state medical specialty societies, regional health collaborative and consumer organizations. These organizations have identified more than 300 tests and procedures that must be scrutinized for their efficacy and efficiency before they are ordered.

In the Commonwealth of MA, Massachusetts Health Quality Partners (MHQP) is leading a multi-stakeholder effort to advance the Choosing Wisely campaign.

“The Massachusetts health care environment provides a fertile ground for Choosing Wisely to take hold,” said Barbra G. Rabson, executive director of MHQP. ” As a Commonwealth, we have made it a priority to find ways to achieve high quality and affordable care  Choosing Wisely is another step in that direction.”

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#NoMUwithoutME: Primary School Edition

bitstrips image

(c) Mighty Casey Media | Creative Commons 4.0 Non-Commercial





Created using Bitstrips. Text engine: Up Goer Five, “Can you explain a hard idea using only the ten hundred most used words? It’s not very easy.”

Bottom line: When you go to the doctor, any doctor, always ask for your records. Ideally, electronic versions of your records that you can look at, download to your own device (computer, phone, tablet), and share with your care team and your family.

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NY Times editorial on forces who “knowingly interfere” with health info exchange

NYTimes ONC 4-16-2015It’s often hard for our movement to get major media attention, but it looks like it’s happening: things are heating up on the “empire strikes back” front that we reported on twice this week.

Friday’s New York Times, page A30, carried an editorial Roadblocks to Sharing Medical Records, about the report ONC sent to Congress last week. (Congress had asked for the report. See our post Monday.)

This is serious stuff, folks – the report said whoever it is (unnamed, so far) is “knowingly interfering” with the exchange of health information. That means they’re preventing patient records from reaching other people who might need them. As the Times editorial and the report say, it appears to be for business reasons, i.e. for their benefit, to the detriment of patient care.

No MU without ME badgeAnd in my view personally, this has to be somehow connected with the rule change proposed a week ago, in which lobbyists are saying providers shouldn’t be required to make it easy for all of us to get our information. That’s the #NoMUwithoutMe campaign, that we posted Thursday.

The Times had a feature article last November, Medical Records: Top Secret. Here’s hoping we continue to see growing media coverage – this is serious stuff. Remember:  No doctor can do what they’re trained to, if they don’t have the facts.

Restricting flow of patient information
is not a valid playground
for private business interests.

If you want to do that, go find some other industry.


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“No MU without ME”: join the campaign to fight health data hiding

No MU without ME badge

Click to download this social media badge. See blog post for instructions.

Several edits made, 1-2pm
There is a movement underway – a movement for patient liberation and autonomy – and the empire is striking back, interfering with our efforts. We – the whole movement, not just SPM – need your help.

If you’re in a hurry, skip down to the Do this first section. But come back and learn more about why this matters.

What’s at issue

A proposed rule change from Federal regulators would reduce the requirement for healthcare providers (hospitals and doctors) to share and have us use our medical information that’s in their computers. In short, these people have told regulators that it’s too hard, and they want to get paid without making data sharing a reality. For more information, see our post Monday.

What’s this “MU”?

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PHI Data Breaches May be Increasing, But It’s Not Impacting Our Sharing

PHI Data Breaches May be Increasing, But It's Not Impacting Our SharingAccording to a new study in JAMA, data breaches into people’s protected health information (PHI) records are increasing: “[The] study that found almost 30 million health records nationwide were involved in criminal theft, malicious hacking or other data breaches over four years,” notes the AP reporting on the study.

That’s a lot of data theft. Previous researchers supposed the data stealing is occurring primarily for identity theft reasons, or for medical identity theft (a specialized kind of identity theft that, in one common scenario, allows criminals to profit off of fraudulent billings to Medicare).

But the numbers still pale in comparison to credit card thefts — an ecosystem predicated on the very idea of security for the past five decades. In fact, despite spending countless millions of dollars a year to try and stop such hacking and fraudulent activity, the credit card industry has suffered from spectacular failures in the past few years.

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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.

Farzad Mostashari, MD

Farzad Mostashari, MD

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