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Dell Medical School and the Future of Care

In 2009, along with several physicians, patients and health activists, I helped form the Society for Participatory Medicine, a nonprofit promoting “a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in...

Person-Centered #CarePlanning – What data?

Last month, in Communicate What? #CarePlanning, I declared the #CarePlanning hashtag, and told from personal experience the importance of communication in enabling participatory care. I ended with this – my perspective as the person who has the problem and the...

Communicate What? #CarePlanning

I want to share a family story and show how it connects to something we’ll all face, where real participatory thinking – and communication – make all the difference. My wife and I built a house together – the whole house, everything except...
Thanksgiving Letter to my Doctor

Thanksgiving Letter to my Doctor

Coming from Romania 15 years ago, Thanksgiving was not a big thing for me. I didn’t quite grasp the holiday. My husband cooked and celebrated, and I helped and observed it in a detached way. 11 years ago, it was the Wednesday before Thanksgiving. I was 22 weeks...

OpenNotes hits TEN MILLION patient level

As regular readers know, for years we’ve been blogging here about OpenNotes, in which patients and their designated caregivers can read every word their clinicians write, so they can be more informed. The OpenNotes tagline, “Doctors and patients on the...

How can we cope with uncertainty?

We’ve written often about uncertainty, which is a recurring challenge in medicine and especially in participatory medicine, where issues of relationship and decisions are core. Some doctors have told me they were trained to display certainty even when things...

Just Say “No” to Medicare’s MACRA Tokenism

On social media and at meetings like Health Datapalooza, our favorite federal bureaucrats assure us of their commitment to open data and patient empowerment. But those are just soothing words; federal regulations are law. On April 30, I posted on e-patients.net an...

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