e-pts resources

 

e-pts resources, medical records, PM Tech, trends & principles

Let’s crowdsource what a “good” medical record tool for patients is (and list some products)

Ah, social media. On Facebook a couple of hours ago, Swedish SPM member Sara Riggare posted: Responses were quick and robust: “Web MD has an app that you can download that I use. I find it pretty useful.” - Mark Burek “That’s a sticky question. I tried Caresync ([SPM member Amy McFall Gleason’s app) and thought it useful. […]

Read More
e-pts resources, key people, patient networks, trends & principles

Communicating the experience of illness in the digital age

At 9am on Sunday, Sept. 7, 2014, Stanford Medicine X will host a discussion led by Pamela Ressler, Colleen Young, Meredith Gould and me about the power and pitfalls of people sharing their health experiences online. We are “flipping” the panel by sharing resources and participating in online discussions throughout the summer, hoping to include […]

Read More
e-pts resources, medical records, net-friendly docs, PM Tech, positive patterns

HIMSS blog: Thought Leadership – The Patient Perspective

Interesting blog at HIMSS by Pete Rivera: use the patient to redesign the workflow: Thought Leadership – the Patient Perspective For years, I advocated that health IT does not drive business.  I still do. Rethinking your processes to leverage technology is just smart business. You may be thinking, “Great, let’s get a committee together of […]

Read More
e-patient stories, e-pts resources, general, news & gossip, others' e-patient stories, Patient Conference Participation, patient networks, positive patterns, practice variation, pt/doc co-care, pts as teachers, reforming hc, research issues, shared decision making

Patients Invited! Health Informatics Conference seeks Patient Participation

An international conference addressing information technology and communication in health (ITCH) will be held February 26 – March 1, 2015 in Victoria, British Columbia, Canada. Professor Stephen Hawking’s statement, “we learned to talk, we learned to listen, we unleashed imagination” provides the motivation for this year’s conference. The main conference themes are: Patients Talking The […]

Read More
e-patient stories, e-pts resources, key people, positive patterns

Uri Goren TedxHIT video: Patients are Not Empty Carriages

Uri Goren is the General Manager of e-Pochonderiac a blog about healthcare and digital technology and also a digital health consultancy and agency working in Israel to support digital health in the local health and pharmaceutical industry and to promote the roll of the patient in the healthcare ecosystem. This venture has begun from a […]

Read More
e-pts resources, key people

Via @Cancer101: 10 things every patient needs to know

A handy one page chart from our Past President Sarah Krug through Cancer101 summarizes the best way to become an e-patient: http://cancer101.org/wp-content/uploads/2012/06/top-10.pdf Here are a few points: You have a story to tell. Don’t be afraid to tell it. Make sure to write down and ask questions. Know your options so you can make informed decisions… […]

Read More
e-patient stories, e-pts resources, found on the net, policy issues

Times science reporter asks: “Ever hit a paywall?”

Thanks to Twitter friend @CourageSings for this tip. I retweeted it, but I know a lot of readers of this blog will answer “yes” and might not see the tweet: Ever hit a paywall trying to access a scientific paper? For a story, would love examples from non-scientists. Plz email me amy@nytimes.com — Amy Harmon […]

Read More
e-pts resources, positive patterns, pt/doc co-care, trends & principles

SPM loves Flip The Clinic – we’re an “ally”

The Society for Participatory Medicine enthusiastically supports this new, transformational initiative from the Robert Wood Johnson Foundation: Flip the Clinic. (Don’t you love the logo? Turning the clinic on its ear?) It’s utterly engaging and empowering to patients, because it puts information in the hands of the patient and family – outside of the clinic visit, where we can […]

Read More
e-pts resources, positive patterns, pt/doc co-care, pts as teachers, trends & principles

WikiProject Medicine: med students join in producing high quality Wikipedia articles. (You can, too.)

Significantly expanded, below the video, an hour after the first post. Peter Frishauf, member of the editorial board of our journal, has brought what is to me the most exciting news for participatory medicine since the OpenNotes project. Importantly, this news may have broader implications – because it addresses one of the core challenges of […]

Read More
e-pts resources, patient networks

Rare Diseases: Powered by Patients

A guest post by Wendy White of Siren Interactive in honor of Rare Disease Day: Can empowered patients drive change in healthcare? Take a look at the progress that has been made in the rare disease community over the last 30 years—much of it spearheaded by patients and caregivers–and I think you’ll agree that the answer is definitely, […]

Read More