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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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“Lighting Goes to Ground”: Peter Elias responds to Paul Levy in JoPM

JoPM logoPerhaps it’s time for an argument about how we’re doing this.

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:

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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


Times Square jumbotron, March 16 – see the black text sign: “Healthcare Information Sharing: Survey by SPM”

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:


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Regina Holliday’s whooping cough story in PharmaTimes: “Treat us as partners”

Regina Pharma Times pertussis

Click to view the interview in high res in their online viewer

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, 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:
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image of HIPAA form

Accountable Care: Transparency of Fees Is Mandatory

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.

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Leveraging Technology to Improve Health

March 2015 at the UN.1 - Copy

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.

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Partnering with Patients: From Theory to Practice

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?

A painting from Regina Holliday's Walking Gallery

A painting from Regina Holliday’s Walking Gallery

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!


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