policy issues

 

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 […]

Read More
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 […]

Read More
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 […]

Read More
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 […]

Read More
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 […]

Read More
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.

Read More
medical records, policy issues

EHR? What is it good for?

I live in a small country: Sweden has the population of Michigan on the land area of California, so you shouldn’t really have even heard of us. But I guess that ABBA, IKEA, H&M and the Nobel Prize sort of helps :). Living in a small country of course has both pros and cons, and […]

Read More
ethics, PM Tech, policy issues, positive patterns, reforming hc, trends & principles

Key legal victory moves medical device patients one small step closer to full access to their data

For whose benefit does the healthcare industry exist? For the investors, or the people whose needs are the reason for the industry? Facebook last night was celebrating a small but significant legal victory this week for the “gimme my DaM data” movement (“Data about Me”), of whom super-e-patient Hugo Campos is a well known example. […]

Read More
policy issues, reforming hc

Sure to be a complex controversy: “Concurrent surgery” (Boston Globe Spotlight series)

Ah, the world of social media. This morning’s Boston Globe “Spotlight” investigative team (which won a Pulitzer in 2003) has this, citing local superstar hospitals Massachusetts General and its sister hospital, Brigham & Women’s. Within an hour the discussion got so meaty that I knew we had to move it here, because Facebook threads basically disappear in a […]

Read More
medical records, policy issues

“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 […]

Read More