hc’s problem list

 

e-patient stories, general, hc's problem list, policy issues

Screw HIPAA: Here’s a Look at My Doctor’s Office

A few months ago, I complained about the layout of one of my doctor’s offices. There’s a rough layout drawing of the office waiting area to the side there. I’m standing just in front of the number 1, while people are sitting along the wall behind me. Do you see the problem? After I identify […]

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hc's problem list, research issues

NY Times: “Do clinical trials work?”

Just a quick note on something I’m happy to say we’ve been hollering here for years: A lot of what passes for “evidence” from peer reviewed medical journals is scientifically weak, and has never been verified by an independent lab. That means to be scientific, e-patients and their physicians must be cautious about interpreting any published result: […]

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hc's problem list, policy issues, research issues, shared decision making

Raw data now! Open science! Sign Ben Goldacre’s #AllTrials petition

Last year during TEDMED 2012, in “The cancer at the core of evidence-based medicine”: Ben Goldacre on the missing data, we covered the vitally important news that a lot of medical research has gone missing, leading to a severely corrupted foundation for evidence-based medicine. If you haven’t read that quick post with 6 minute video interview, please […]

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end of life, hc's problem list, key people

Caregivers, please share your stories

The Pew Research Center will release a new report about caregivers in June. As we prepare, I’m looking for stories to share with reporters so they can better understand the context for our data. If you have experience caring for a family member, a friend, or a neighbor, either now or in the past, please consider writing […]

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hc's problem list, positive patterns, reforming hc

What if health care…?

For over a year I’ve been the accidental manager of a community garden. All I did — I swear — is point out an open plot of land and people started pitching in, planting, asking friends to join them. All of a sudden we’d transformed a bare patch into something beautiful. I thought for sure […]

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found on the net, hc's problem list, policy issues

What if we treated substandard *info* like substandard drugs? (Riff on an IOM report)

Major typo fix, 3:23pm – “they’re giving” is not same as “they’re given”! Sorry. This note arrived today from the Institute of Medicine. I’m in DC at the moment, at a big briefing by the Health Affairs policy journal about patient engagement, and a key issue keeps coming up: the problems that happen when patients […]

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e-patient stories, hc's problem list

Cristin Lind: My new litmus test for patient-centeredness

Guest blogger Cristin Lind is an e-caregiver and e-patient; her personal blog is called Durga’s Toolbox. When trying to find a definition for what real patient- or family-centered care looks like, I can easily to get caught up in inspirational jargon. But a recent visit for my biannual mammogram (fun!) helped me give a very […]

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e-pts resources, hc's problem list

NEJM: Post-Hospital Syndrome

SPM member Marge Benham-Hutchins (see her December post) spotted this item. It’s a vital point for patient and family awareness, leading to patient engagement – patients as responsible drivers of their health. I added the italics below. From a recent Perspectives essay in the New England Journal: “To promote successful recovery after a hospitalization, health […]

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e-patient stories, e-pts resources, hc's problem list, key people, policy issues

Top 5 Posts of 2012

I was curious to see which were the top 5 posts, traffic-wise, and figured readers might be interested, too. Here’s the line-up: #1: Open knowledge saves lives. Oppose H.R. 3699! by Gilles Frydman The e-patients.net post with the highest number of views is a clear call to action in favor of open access to research. […]

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general, hc's problem list, medical records, reforming hc

Danny van Leeuwen: The Right Information in My Health Record

Danny van Leeuwen, Opa MPH RN CPHQ is a patient (Multiple Sclerosis), a caregiver, a nurse, and a leader. A version of this piece originally appeared on his blog, Health Hats. What do we e-Patients need in our electronic health records? Help by sharing in the comments: 1) The scenarios where medical record content was […]

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