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Monthly introduction to e-Patients.net

This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn.  Here’s how to become a Society member, individual or corporate.

Our publications:

“Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

Additional resources:

Contact us:

Welcome!

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“We demand a medical record SPIGOT!”

We demand a medical record spigot!Please see my long-overdue post contributing to the @GetOurHealthData movement, on their blog.

The more I’ve thought about all the different issues around data transfer, meaningful use, APIs and everything, the more I’ve approached the inescapable conclusion that there’s only one answer: most medical record vendors say they’re paralyzed about this and too backlogged with other work, but we still have health problems to solve. So I say, we deserve a big freakin’ spigot attached to the EMRs, to just spew our data to us.

Not an endless series of “pretty please please give me my dying husband’s record, please” for an absurd amount of money (SPM pioneer Regina Holliday’s true story); a spigot so we just turn it on and it flows. To us – the people who have more need for it than anyone else, to manage our own and our families’ health.

I have many good friends in the health IT world who know many things about the difficulties of moving health data around. Fine: give it to us, in its raw form, and we’ll find vendors who can figure it out, if you folks in the industry can’t. Besides, I know you have a huge regulatory backlog of things you have to do – let us cope with the data; you just give it to us.

Give us a great big spewing medical record spigot. Give us our DaM data – Data About Me!

 

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Monthly introduction to e-Patients.net

This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn.  Here’s how to become a Society member, individual or corporate.

Our publications:

“Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

Additional resources:

Contact us:

Welcome!

Read More     Comment Now »

Happy Birthday Medicare, Medicaid and Social Security

medicareMedicaid

On July 30, 2015, Medicare and Medicaid will celebrate their 50th birthday. In August of 2015 Social Security, celebrates its 80th birthday.

Amendments to the Social Security Act (Title XIX) that established guaranteed basic health coverage programs for all elderly, low-income adults and children, pregnant women, and people with disabilities were signed into law on July 30, 1965, by President Johnson These often maligned, essential social programs supported with employee pay deductions and premiums from subscribers as well as American tax dollars have had a rocky existence over the past 50 years.

The growing and aging population, a shrinking workforce paying into the fund, the introduction of sophisticated medical treatments and technologies, the explosion of new high cost drugs and other dynamics have forced Medicare and Medicaid  into constant change  and reevaluation.

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Partnering with Patients – From Theory to Practice: #HealthcareTransformers

Three continents. Five patients. Three conferences.

Dramatic change is occurring in healthcare where patients, “the true trans­formers in care”, are changing the playing field, and redefining how they want to engage and affect change.

The Walking Gallery in Grantsville, MD.

The Society for Participatory Medicine is a non-profit organization devoted to promoting the concept of participatory medicine, a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

The Society for Participatory Medicine created a patient travel scholarship in 2012 to help support the attendance of patients at health conferences to help move the needle in advancing participatory medicine.

Last month, five patients were awarded the opportunity to attend the following conferences:

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A Turing test for diagnosis: BMJ evaluates online symptom checkers; good Globe article

A new article in the BMJ this week reports on a good, clever evaluation of 29 online symptom checkers, showing that some have a clue and some don’t. I love it; in my view the bottom line is “Some are better than nothing, none is near perfect, and some are junk. Learn, but as with all things online, be careful.”

The method used (described below) is clever: it’s not unlike the famous Turing test (Wikipedia), which examines whether you can tell the difference between a computer and a real person. (Answer: real doctors, while far from perfect, are a lot better than today’s websites.)

Today’s Boston Globe has a good front page article by Felice Freyer about it. SPM co-founder Susannah Fox, currently Chief Technology Officer at HHS, is quoted, as am I – it’s great to see participatory perspectives sought out by the Globe!

Method: evaluate websites the way we evaluate docs

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Monthly introduction to e-Patients.net

This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn.  Here’s how to become a Society member, individual or corporate.

Our publications:

“Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

Additional resources:

Contact us:

Welcome!

Read More     Comment Now »

Conference Organizers to Affected Patients: “Go Fund Yourself”!

SPM member MaryAnne Sterling is Co-founder of tech startup Connected Health Resources – she’s a healthcare transformer and person-centered care activist whose motto is: no family caregiver left behind. A recent experience, what she calls her “go fund yourself” moment, is captured in this guest post.

maryanne sterling photo

MaryAnne Sterling

During the Holidays, I carry on a time-honored tradition in my family: baking cookies. Over the years, I’ve gotten into the habit of double-checking my recipe once all of the ingredients are in, to make sure I haven’t forgotten anything. A single missing ingredient will result in disastrous cookies. My husband, who knows how meticulous I am, teases me about this – to which I typically respond “old habits die hard”.

I use this same analogy to describe the missing ingredient at healthcare conferences around the country – the patient. And the family caregivers who comprise the backbone of our healthcare system. These critical components of the care team are not even invited to participate in discussions that are about THEM. In fact, a visit to the websites of these events, including those created to tackle the topic of “patient engagement,” reveals a list of distinguished speakers, all with advanced degrees, but few with a patient-level view of a disease or chronic condition.

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No Rhyme or Reason

HealthCareCosts (1)We have read and heard a lot about the disparities in the cost of care from one hospital or clinic to another. We have read and heard a lot of grumbling about the uneven availability of health care services in this country. Many of us have been outraged to learn that Pharma companies can charge whatever they want for drugs that they have developed  because our elected representatives passed legislation that provides Pharma with this discretionary power.

These same laws allow Pharma to provide a percentage of the direct cost of the medications to doctors. Although a mandate in the Affordable Care Act requires information on Pharma payments to physicians be made public via the CMS Open Payments online database, this is little consolation to thousands of patients who bear the brunt of this inequality in our payment system.

Because our system is so dysfunctional and our cost of care so elevated, there are daily instances of patients declaring bankruptcy because they cannot afford their prescription drug costs. There are also too many situations where patients are dying prematurely because they simply cannot afford to obtain the medications that could restore their health.

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On Making Patient Reviews of Physicians More Useful

I recently hosted a Google Hangout on Air entitled Patient Reviews of Physicians: The Wisdom of the Crowd? (presented by The Harlow Group LLC in association with The Society for Participatory Medicine).

I spoke with Niam Yaraghi (Center for Technology Innovation, The Brookings Institution) and Casey Quinlan (Mighty Casey Media) following their interesting back-and-forth online on the question of whether and how patient reviews of physicians can add value. Please take a look at the posts that preceded the hangout. Here are the initial post and reaction: Niam’s post and Casey’s post – as well as Niam’s follow up post and Casey’s follow up post.

Please feel free to watch the Hangout on Air. Further below, I’ve shared a version of my introduction to the hangout, as well as some of the takeaways suggested by Niam and Casey (and taken away by me). We need your help refining these takeaways in the comments.

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SPM applauds King v Burwell – “making healthcare accessible & participatory for all”

SPM handshake logo imageThe Society for Participatory Medicine believes that an effective healthcare system is a collaborative one, where care providers and the patients and families they care for work together toward the best possible health outcomes. The importance of this partnership cannot be overstated; its supporters range from the Institute of Medicine to the World Health Organization, echoing the words of visionary physicians like our movement’s founder “Doc Tom” Ferguson and health data visionary Warner Slack MD, a colleague of SPM founders, who said patients are “the most under-used resource” in the healthcare system.

Anything that restricts families’ access to that system harms healthcare, not to mention children, adults, and elders in their time of need. Preventing this societal harm – by ensuring access to care – was the foundational purpose of the Affordable Care Act … more correctly known, in fact, as the Patient Protection and Affordable Care Act (PPACA). Yet twice opponents of this act have sought to defeat it.

In yesterday’s King v Burwell decision the US Supreme Court has cleared the way for PPACA’s promise to be fully delivered to the American people. SPM applauds this ruling, and looks forward to advancing the national effort to make healthcare affordable, accessible, understandable, and — most importantly — participatory for all Americans.

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