Society for Participatory Medicine
e-patients.net blog
pt/doc co-care
e-pts resources, patient networks, positive patterns, pt/doc co-care, trends & principles, Why PM
Libro Blanco de los e-Pacientes en Español
To read this post in English, click here. Hacía tiempo que teníamos en mente la posibilidad de llevar a cabo la traducción del Libro Blanco de los e-Pacientes al Español, ya que con más de 420 millones de hispanoparlantes en todo el planeta, nuestro idioma es ya la segunda lengua más hablada en el mundo, [...]
Read Moree-pts resources, patient networks, positive patterns, pt/doc co-care, trends & principles, Why PM
Announcing: the e-Patient White Paper, in Spanish
It’ s been a long time coming, but it’s here! From the English “e-Patients: How they can help us heal health care,” you can now click to download the Spanish e-Pacientes: cómo nos pueden ayudar a mejorar la salud. To read this post in Spanish, click here. From the editors of the Spanish edition, Elia Gabarrón and Luis Fernández [...]
Read Morept/doc co-care, pts as teachers, shared decision making, Why PM
Action in the face of uncertainty
Science seeks certainty. The problem in medicine is, the body is complex and our knowledge is incomplete. People who want certainty – physicians or patients – are kidding themselves. And if we expect docs to be perfect, it’s a setup for dysfunction. Sometimes I hear of patients who believe their physicians dissed a proposed or experimental [...]
Read Moregeneral, key people, policy issues, pt/doc co-care, reforming hc, trends & principles
Lab Results for All! Of Data Liberation, Participatory Medicine, and Government 2.0
On September 14, HHS released for comment draft lab results regulations that will, if finalized, effectively bathe the Achilles’ heel of health data in the River Styx of ¡data liberación! Lab results will be made available to patients, just like all other health data. (See the HHS presser and YouTube video from the consumer health [...]
Read Morepatient networks, pt/doc co-care
When Patients Band Together: Far From a Disgrace
When it comes to news sites, I love scanning readers’ comments as much as the original articles. Comments are an unfiltered feed, a window into public opinion (in other words, catnip for someone like me). One thread caught my eye recently. Ron Winslow wrote a very nice piece in the Wall Street Journal about how [...]
Read Moree-patient stories, positive patterns, pt/doc co-care
e-Patient Classic: Elyse Chapman, April 2009
Today I heard from a friend who’s had a tumor discovered. S/he decided to fire the current doctor, who would not return phone messages and was “intellectually lazy” – not interested in pursuing ideas my friend brought up that might require some effort but could definitely refine the treatment plan. The whole “let patients help” [...]
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New FDA book: “Communicating Risks and Benefits: An Evidence-Based User’s Guide”
Guest post by SPM member Gangadhar Sulkunte. We posted his family’s e-patient story two years ago. The FDA’s Risk Communication Advisory Committee has published a PDF book called ”Communicating Risks and Benefits: An Evidence-Based User’s Guide.” It’s meant to help healthcare practitioners and researchers communicate their work with patients, care givers and the public at [...]
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Communication, A Vital Skill for Participatory Medicine
Guest post by SPM member Nancy B. Finn, author of the forthcoming book e-Patients Live Longer: The Complete Guide to Managing Your Health Using Technology. Participatory medicine depends on the availability of health information to all members of a care team. Communication – the exchange of thoughts, opinions, or information by speech, writing, video or signs [...]
Read Moregeneral, medical records, pt/doc co-care, Why PM
Introducing Sue Woods, new SPM board member
The Society for Participatory Medicine recently named three new board members. They’ve been introduced to the members on our private listserve, and we’ve been thinking about introducing the new leadership to the public here. One is Sue Woods MD MPH, a potent and high-energy advocate for patient engagement and full access to medical records, at the Veterans [...]
Read Moree-pts resources, pt/doc co-care, shared decision making, Why PM
“Don’t you wanna know??” A proposed PSA about asking questions
Now up on YouTube: You, the patient, are a vital component of medical decision making. Believe it or not, it’s worth your effort to find out about your treatment options! This informal FlipCam vignette models a physician encouraging the patient to ask: “Don’t you want to know??” Cast: Pat Mastors as the empowering physician, and [...]
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