policy issues

 

medical records, policy issues

You Won’t Believe What Medicare Just Did on Patient Engagement!

Quick summary for the impatient: Michael’s post urges public comment in the upcoming comment period, and ends with this: “If we in the patient community do not raise questions and objections to this critically important MACRA rule, you will definitely not believe what happens next.” – e-Patient Dave Sure, I’ve always wanted to write a clickbait […]

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policy issues, pt/doc co-care, pts as teachers

Don Berwick wants healthcare to take it to the limit, with Patients as Peers

Decades ago, there began a rigorous effort to tackle health care problems by focusing on science, improvement and measurement. A prominent driver of all things related to practice betterment has been The Institute of Healthcare Improvement, or IHI. Led by pediatrician Don Berwick and colleagues, IHI’s siren song has been “Plan, Do, Study and Act” […]

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medical records, policy issues, positive patterns

SPM survey results at HIMSS: “Patients want to be involved with their health information”

It’s time again for the gigantic (50,000 people) HIMSS trade show – the Health Information Management Systems Society, in Las Vegas this year. These new SPM slides (on Slideshare) will be shown in the Consumer Engagement zone, summarizing our two surveys on what patients want: The following is an editorial – my opinion, not a resolution […]

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policy issues, reforming hc, research issues, trends & principles

The Precision Medicine Initiative, Patients’ Health Data Rights and You

The recent Precision Medicine Initiative Summit at the White House saw dozens of private entities committing to join with the administration in supercharging the effort to enroll one million patients into precision medicine research programs, collecting and securely sharing data about them – including genomic data – all in an effort to crack the code […]

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medical records, PM Tech, policy issues

Proposal for a TRULY patient-centered medical record

The other night I participated in a very useful Google+ hangout with SPM members Adrian Gropper and Michael Mascia, and Michael Chen [of NOSH, explained below]. The discussion focused on a subject I think is incredibly important: the patient-centered health record. Really: patient-centered. Like, built around the patient – not a provider system built with supposed “patient-centered” thinking. This topic […]

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policy issues, positive patterns

NEJM opens access – discuss! Time for a Patient-Driven Health Information Economy?

A Twitter chat this morning, prompted by SPM member John Sharp, produced a rapid and wonderful change in an ongoing problem: so often articles about patients aren’t open to patients. In this case it’s an intriguing new article today in the esteemed New England Journal of Medicine: “Time for a Patient-Driven Health Information Economy?” Well, tweets sent to lead […]

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general, hc's problem list, medical records, policy issues

Individuals’ Rights to Their Health Information: The Federales Awaken

A long time ago (in internet years), the original HIPAA regulations were promulgated. (The final Privacy Rule was published in 2000.) They’ve been tweaked and updated over the years, most notably in the “mega-reg” promulgated a few years  back in order to implement the updates included in the HITECH Act. For purposes of the present […]

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e-pts resources, medical records, policy issues, positive patterns, pt/doc co-care

50 million more patients to get OpenNotes! Huge win for empowered partnership!

Big news: a multi-foundation $10 million grant will spread OpenNotes access to fifty million more patients! Nearly 20% of America will have full access to their providers’ visit notes, so they can review them from anywhere! Regular readers know we’ve always been loud fans of the OpenNotes project. Initially funded by Robert Wood Johnson Foundation […]

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medical records, policy issues

NPR Shots: Small Violations Of Medical Privacy Can Hurt Patients And Corrode Trust

One pillar of participatory medicine, as SPM co-chair Dr. Danny Sands often says, is access to our medical records: “How can patients participate if they can’t see what I see??” But a major impediment to free-flowing information is incompetence or malfeasance in protecting our data, which makes some people want to clamp down. Patients and […]

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e-pts resources, found on the net, policy issues, positive patterns

Crohnology Blog: Am I disabled?

The series of blog posts at the online community website Crohnology continues for patients with IBD. Duncan Cross has a post that is interesting for anyone with an autoimmune or other disabling chronic condition: Am I disabled? It discusses the Americans with Disabilities Act in 1990, and the extension in 2008.

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