Society for Participatory Medicine
e-patients.net blog
medical records
medical records, policy issues, trends & principles
What Do Aggregators Know About Me and Why It’s Important
Guest post from SPM member Adrian Gropper, MD of HealthURL.com. Information is the foundation for patient engagement. Nothing about me without me. Although personal medical information starts out with your various institutions and doctors, it doesn’t just stay with them. The information moves and collects in secondary locations such as insurers (claims), public health agencies [...]
Read Morefound on the net, medical records, policy issues, trends & principles
KQED blog on Hugo Campos and his quest to access his data
KQED blogger and SPM member Eve Harris has written a great brief piece on Hugo’s desire to access the data from his implanted defibrillator, beginning: Hugo Campos was apologetic about postponing a scheduled interview with me two weeks ago. In a midday email he wrote, “Just had the biggest arrhythmia ever. I’m trying to recover [...]
Read Moregeneral, medical records, policy issues, reforming hc
SPM’s responses to the proposed rules for Meaningful Use Stage 2
Afternoon additions: You too can submit your opinion on the official public comment site. They even allow uploading attachments. As I just told a friend on Facebook: “How often, before this administration, did Washington make it truly easy for anyone to tell their story, from home? This administration is really open to this, and I [...]
Read Moremedical records, policy issues
“With this the AHA admits that it does not know what an EHR was and is meant for”
Cross-posted from the ICMCC blog, a post by its chairman, Lodewijk Bos, a Dutch cancer patient who is a great advocate for information, technology, and patient engagement. The ICMCC news feed is a terrific daily compilation of health IT news. A long-time advocate for patient empowerment – from his own experience beating unbeatable odds – [...]
Read Moremedical records, policy issues, positive patterns
Important ONC/NeHC Webinar, noon ET – the Patient’s Role in EHR Data Quality (SPM speaking)
I should have announced this long ago but I’ve just been too busy for my own good. Go register now! FREE! Attendance is limited to 1,000. (It’ll be archived online of course.) Or click the graphic to register: Why this matters: Data quality is important, and it’s not guaranteed. As long-time readers (and members of [...]
Read Moregeneral, medical records, policy issues
American Hospital Association declares war on patient empowerment. Please act.
[Reminder: The place to register an official comment to the government is this page on Regulations.gov. Monday May 7 is the last day.] ____________ New, 11pm ET on May 2: See Regina Holliday’s addition at bottom. Evening addition: In a comment below, SPM policy chair David Harlow notes that (perhaps in addition to what you do below), [...]
Read Moremedical records, news & gossip, policy issues, positive patterns
Globe article on EMRs: status and the safety issue
In today’s Boston Globe, the cover story for the daily ”G” magazine is “Record-Keeping 2.0,” by Chelsea Conaboy (@cconaboy). Subtitled “Medical care is shifting to electronic data files – but how safe is it?”, it’s a good mass-market introduction to the subject and where we sit today. If your grandmother or neighbor wonders what all the [...]
Read Morefound on the net, hc's problem list, medical records
Let’s Get Medical Info as Good as Our Pets Get! — A Petition
SPM member Ken Farbstein sent us this invitation to help persuade the Office of the National Coordinator for Health Information Technology to include printed summaries of doctor visits in the ONC’s definition of meaningful use. After our pets go to the veterinarian, many of us promptly and routinely get a paper summary that instructs us [...]
Read Moree-patient stories, medical records, net-friendly docs, social media
Regina Holliday / Ted Eytan interview: StoryCorps audio, now in the Library of Congress
One of the best-known sad stories in the e-patient movement is that of SPM member Regina Holliday, her husband Fred, and their two children. Fred died three years ago of kidney cancer in a series of failures of American healthcare, leaving a story that Regina now tells in public speaking, blogging, and – most especially [...]
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Getting copies of your medical records: rule & resource info from CDT
The Center for Democracy and Technology (CDT) is one of my favorite sources for accurate information on the rules about our rights to access our medical records. Their wizard Deven McGraw is widely recognized as one of the best authorities anywhere on HIPAA – the 1996 law and regulations that established in 2000 that you [...]
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