Health and Medical News and Resources

General interest items edited by Janice Flahiff

Patients Not Included * [Inclusion of Patients at a Medical Conference]

From the 25 October 2013 blog item By LESLIE KERNISAN, MD at The HealthCare Blog

 few weeks ago, I went for the first time to Stanford’s Medicine X conference. It’s billed as a conference that brings a “broad, academic approach to understanding emerging technologies with the potential to improve health and advance the practice of medicine.”

Well, I went, I saw, and I even briefly presented (in aworkshop on using patient-generated data).

And I am now writing to tell you about the most important innovations that I learned about at Medicine X (MedX).

They were not the new digital health technologies, even though we heard about many interesting new tools, systems, and apps at the conference, and I do believe that leveraging technology will result in remarkable changes in healthcare.

Nor were they related to social mediaehealth, or telehealth, even though all of these are rapidly growing and evolving, and will surely play important roles in the healthcare landscape of the future.

No. The most remarkable innovations at MedX related to the conference itself, which was unlike any other academic conference I’ve been to. Specifically, the most important innovations were:

  • Patients present to tell their stories, both on stage and in more casual conversational settings such as meals.
  • Patient participation in brainstorming healthcare solutions and in presenting new technologies. MedX also has an ePatient Advisors group to help with the overall conference planning.

These innovations, along with frequent use of storytelling techniques, video, and music, packed a powerful punch. It all kept me feeling engaged and inspired during the event, and left me wishing that more academic conferences were like this.

These innovations point the way to much better academic conferences. Here’s why:

The  power of patient presence

I wasn’t surprised to see lots of patients at Medicine X, because I knew that the conference has an e-patient scholars program, and that many patients would be presenting. I also knew that the director of MedX, Dr. Larry Chu, is a member of theSociety of Participatory Medicine. (Disclosure: I’ve been a member of SPM since last December.)

I was, on the other hand, surprised by how powerful it was to have patients on stage telling their stories.

How could it make such a difference? I am, after all, a practicing physician who spends a lot of time thinking about the healthcare experience of older adults and their caregivers.

But it did make a difference. I found myself feeling more empathetic, and focused on the patient and family perspective. And I felt more inspired to do better as a physician and as a healthcare problem-solver.

In short, having patients tell their stories helped me engage with the conference presentations in a more attentive and meaningful way.

Read the entire blog item here


October 26, 2013 Posted by | health care | , , , , , , , | 1 Comment

[Journal Article] The Emergent Discipline of Health Web Science -with related links and articles

Tim Berners-Lee: The World Wide Web - Opportun...

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Came across this article through an online professional health community.  It describes how the Internet is changing approaches to healthcare issues.  Current evidence shows Web sites can empower professional and lay alike through informational Web pages, social media, health record annotations and linkages for exploration and analysis. However, these applications can be built on to better serve the health care related needs of all.  The Web can be better” engineered for health research, clinical research, and clinical practice. In addition, it is desirable to support consumers who utilize the Web for gathering information about health and well-being and to elucidate approaches to providing social support to both patients and caregivers. Finally, there is the motivation to improve both the effectiveness and efficiency of health care.” The paper goes on to outline channelling further efforts in these areas.

  • Social networks
  • Patient Engagement Through Citizen Science and Crowdsourcing
  • Sensors, Smart Technology and Expert Patients
  • “Big Data”, Semantic, and Other Integration Technologies
  • Rapid, Automated, Contextualized Knowledge Discovery and Application

From the full text of the article


The transformative power of the Internet on all aspects of daily life, including health care, has been widely recognized both in the scientific literature and in public discourse. Viewed through the various lenses of diverse academic disciplines, these transformations reveal opportunities realized, the promise of future advances, and even potential problems created by the penetration of the World Wide Web for both individuals and for society at large. Discussions about the clinical and health research implications of the widespread adoption of information technologies, including the Internet, have been subsumed under the disciplinary label of Medicine 2.0. More recently, however, multi-disciplinary research has emerged that is focused on the achievement and promise of the Web itself, as it relates to healthcare issues. In this paper, we explore and interrogate the contributions of the burgeoning field of Web Science in relation to health maintenance, health care, and health policy. From this, we introduce Health Web Science as a subdiscipline of Web Science, distinct from but overlapping with Medicine 2.0. This paper builds on the presentations and subsequent interdisciplinary dialogue that developed among Web-oriented investigators present at the 2012 Medicine 2.0 Conference in Boston, Massachusetts.

Read the entire article here

Related links

The Health WebScience Lab is a multi-disciplinary research initiative between Moray College UHI, NHS Grampian, HIE OpenFinder and Sitekit Solutions Ltd based in the Highlands of Scotland committed to improving health locally, nationally and internationally.

This initiative will lead, connect and collaborate on research in the emerging discipline of WebScience and Healthcare to create communities which take responsibility for their own wellbeing and self-care. This will be achieved through the application of information and other communication technologies via the internet across a whole range of functions that affect health care thereby stimulating novel research between health care professionals, the community at large and industry.

studies ” the effects of the interaction of healthcare with the web, and of the web with healthcare” and how one can be effectively harnessed to change the other

September 6, 2013 Posted by | Biomedical Research Resources, Consumer Health, Educational Resources (Health Professionals), Health Education (General Public), Librarian Resources, Web 2.0 Assignments | , , , , , , , , , , , , | Leave a comment

[Reblog]Let Patients Help: A New Book Authored by e-Patient Dave deBronkart | ScienceRoll

Let Patients Help: A New Book Authored by e-Patient Dave deBronkart | ScienceRoll.

From the 20 March 2013 post at Science Roll

Posted by Dr. Bertalan Meskó in e-patientHealth 2.0My BookshelfWeb 2.0

I was very glad to see the new book authored by e-Patient Dave deBronkart, whose thoughts I describe to medical students as a part of the official curriculum at Semmelweis Medical School, just became available.

Medical professionals must let patients help and become equal partners in the treatment! A must-read book!

Concise reasons, tips & methods for making patient engagement effective.
Third book by e-Patient Dave, cancer beater, blogger, internationally known keynote speaker and advocate for patient engagement; co-founder and past co-chair of the Society for Participatory Medicine. Profile:



March 21, 2013 Posted by | Consumer Health, Educational Resources (Elementary School/High School), health care, Health Education (General Public), Professional Health Care Resources | , , , , , | Leave a comment

Why we need to go from e-patient to i-patient (insurance savvy patient)

From the 3 February 2012 KevinMD column  by Jackie Fox

I found a recent Associated Press article on an aspect of the new health care law that many of us may have overlooked. It requires consumer-friendly summaries of what insurance plans cover, a provision that now seems to be at risk. The insurance industry is up in arms about implementation costs and added regulatory burdens. (There’s a good story at NPR, which includes a link to an example of what the language would look like.)


My initial thought was what a shame it would be to lose that provision. But then my mind flipped to the e-patient movement and how it’s teaching people to be active participants in our medical care. That means learning as much as we can about our conditions and treatment options and sometimes questioning our doctors’ recommendations.

It occurred to me that when we focus only on doctors, we’re missing a very sizable forest for the trees.  One of the overriding concerns of health care reform is getting costs under control. …

This is where I think the “i-patient” needs to step up: “i” for insurance-savvy. We should be demanding to know what insurance companies’ decisions are based on when they deny a claim. My oncologist told me one of his denials was based on the assessment of a general practitioner hired by the insurance company. Without the specialized knowledge of blood markers an oncologist has, this doctor didn’t realize that the normal marker used as a basis for denial wasn’t a good indicator. Where does that leave my oncologist and his decades of experience?  Like he told me, “Medicine is not like taking a car to a shop.” Patients need to know about this. When selecting an insurance company, we should know which ones have the worst record of denying claims.

We also should be keeping a close watch on electronic medical records, beyond simply demanding access to our own records. I recently read a fascinating post by Adam Sharp, MD, founder of par80 & Sermo, called “Why EMR is A Four-Letter Word to Most Doctors.” He explained how EMRs were largely a top-down effort, allowing third parties to implement policies by simply removing options from the EMR.  “If you can’t select a particular treatment option, for all intents and purposes, it doesn’t exist or the red tape to choose it is so painful that there is little incentive to fight the system.”…

…We need an i-patient movement to make sure our voices are heard and our choices are preserved. We need to ensure those choices are made in partnership with our doctors, not handed down to both of us by some invisible third-party payer. We have a Society for Participatory Medicine (I’m a member); maybe it’s time we had a Society for Participatory Insurance. Because our doctors can’t fight this battle alone.



February 8, 2012 Posted by | health care | , , | Leave a comment

The Future of Healthcare Presentation on Video

<p><a href=”″>What is the Future of Healthcare?</a> from <a href=””>Jonathan Richman</a> on <a href=””>Vimeo</a&gt;.</p>

From the 12 August 2011 Science Roll


Jonathan Richman at Dose of Digital published his presentation that focused on the future of healthcare. He included the personalized, direct-to-consumer genetic companies, e-health, e-patients and many more emerging topics.

August 12, 2011 Posted by | health care | , , , , | Leave a comment


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