#HCSM Review—Health Affairs & Rare Disease Edition

This Feb. 13, 2013 edition focuses on the following themes: the Health Affairs Briefing Reminder: New Era Of Patient Engagement held on Feb. 6 in Washington, D.C. and subsequently released edition of Health Affairs — and — the upcoming Rare Disease Day: Disorders Without Borders to be held worldwide on Feb. 28. Included within these focus areas are topics such as health literacy, drug development, healthcare costs, patient-centered care, and deliberations on what makes one a patient.

Health Affairs is the New Shirtless Dancing Guy

Nick Dawson

Dawson attended the HA briefing in advance of the journal's February edition dedicated to all things ePatient. He calls attention to the fact that no "actual patients" were on the panel, while appreciating what HA has done with the issue. Listen in to audio from the HA briefing.

‘Patient Activation’: Real Paradigm Shift or Updated Jargon?
Jacob Molyneux

A nice summary of key issues from the HA briefing, which Molyneux, American Journal of Nursing senior editor, attended in D.C. Molyneux is spot on as he writes, "It’s unlikely we’d be talking so much about patient engagement if we weren’t facing, perhaps as never before, the need to do something about the glaring gap between costs and quality in the U.S. health care system."

American Institutes of Research

AIR authors contributed two articles to the HA edition. The first article compares data available with what patients are seeking. The second suggests a framework for increase patient engagement. The link in turn links to reprints of both articles in full.

Family Races Against the Clock for Treatment for Giant Axonal Neuropathy

Eileen O'Brien
Lori and Matt Sames are fighting for the life of their daughter, Hannah, who has the ultra rare disease, Giant Axonal Neuropathy (GAN). When Hannah was diagnosed in 2008 there was no GAN patient organization, so the family started Hannah’s Hope Fund and are about to start a gene therapy clinical trial.

A New Start - One Conference at a Time

Sean Ekins

App developer Ekins discusses his inspiration for Open Drug Discovery Teams (ODDT), which applies the concept of open sourcing to the collaborations of research and awareness for rare diseases. Yet within the technology is the humanity and curiosity that leads to innovation.  

Hopes and hurdles in the fight for Issac and his rare disease

Adriana Barton

Canadian press The Globe and Mail shares the story of a young patient diagnosed with MPS VI, an extremely rare metabolic disorder. The article explores the burden rare disease patients face without a large enough population of patients to submit to drug testing, as well as pharma's general reluctance to invest in drug development for small populations.

Employee Social Media Policies After NLRB Appointments Invalidated by Federal Court ... Everything You Know Is Wrong?
David Harlow
The National Labor Relations Board has issued a series of reports based on its decisions in cases regarding employer regulation of the use of social media by employees. Now that the validity of recess appointments to the NLRB has been upended by the DC Circuit Court of Appeals, these – and many other – NLRB rulings are technically invalid. Should health care employers therefore ignore the NLRB precedents on regulating social media? Harlow says no – the contours of the rulings should still be followed in sensible social media policies.

Who is the Healthcare Consumer?

Nicola Ziady

Breaking down age brackets, Ziady explores connecting the brand with the consumer. "More and more, patients are shopping around for care, the same way they do for other consumer services. Patients are actively researching their clinical care alternatives to determine how and where they will spend their healthcare dollars."

2012 Health Survey Data

Pew Internet

Check out this preliminary version of the September 2012 health survey data from the Pew Research Center. A full report will be released later in the year.

Paying Lipservice to Patient Engagement

Health Affairs held a briefing this week in Washington, D.C. focused on the content of the magazine's February 2013 edition, New Era of Patient Engagement. The briefing boasted a notable list of policy wonks as speakers including Howard Koh, Assistant Secretary for Health, US Department of Health and Human Services; David Colby, Vice President of Public Policy, Robert Wood Johnson Foundation; and Joe Selby, Executive Director, Patient-Centered Outcomes Research Institute. Yet no one on the panel bore the simple title of ePatient.

The event's twitter stream (tagged #HA_Patients) hit a few highlights, and a podcast was released after the briefing. These tech alternatives to actually reading the HA edition will have to suffice for most patients due to an all too common problem—journal access. In the medical and academic journal market, one must pay to read. An individual subscription to HA, delivered online, is $143 per year. A print subscription is $158, and the Premium subscription that includes online, print, and mobile versions comes in at $178. In comparison, the New England Journal of Medicine (NEJM) costs $169 each year for a print, online, and iPad subscription and $139 for the digital only edition. The American Medical Association's journal (JAMA) is $125 a year, online only, and $185 for print for those who are in an "other" profession such as being a patient. I can't help but think of these prices in relation to other bills. To subscribe to HA, NEJM, and JAMA—digital only—would cost $407 a year, which, given my insurance, would be the equivalent of 40 generic copays, 16 trips to the primary care doc, or 8 trips to the neurologist. For a patient to subscribe to the journals of record simply isn't practical.

So then how can patients be expected to participate in their own healthcare, to engage in improving the healthcare system as a whole, if the majority of the medical establishment continues to shut patients out of the dialogue? To my fellow patients I say, "They are talking about us, but they are not talking with us."

The Society for Participatory Medicine featured in 2011 an article on the Patient Activation Measure—a title that sounds suspiciously like a robot's start up sequence—which is a method for assessing how activated a patient is and how to use that information to improve outcomes. Developed by Dr. Judy Hibbard, who appeared on the HA briefing panel in Washington, PAM uses thirteen questions to ascertain the patient's engagement level such as "Taking an active role in my own health is the most important thing that affects my health," "I understand my health problems and what causes them," and "I am confident I can figure out solutions when new problems arise with my health." Patients are assigned an activation level of one through four. It's an interesting concept; however, there remains an element of what must be done TO patients rather than what can be done WITH patients.

Susan Dentzer, Editor-in-Chief of HA, opened the HA briefing with this statement: "Even though we're calling this the New Era of Patient Engagement, probably a better title would have been the New Era of Person Engagement because after all we all are people, we are either patients in the past, we have been patients, we are either patients now, or we will probably will be patients in the future, but we can certainly agree we are all people, so think of this also as the new era where we really try to get us as persons engaged in our healthcare."

I do not fully subscribe to the "we are all patients" mantra, yet I appreciate Dentzer's qualification that while patienthood may have not yet occurred, our personhood gives us a common bond. Patients are people. Providers are people. Even policy wonks are people. The problem is that being a person does not translate to being a patient the same way that being a patient translates to being a person. A person eats, sleeps, breathes. A patient has been on a liquid diet for days before surgery. A patient choses which position in which to sleep by that which causes the least pain. A patient measures lung capacity with a spirometer to ward off the onset of pneumonia brought on by bed rest and shallow breathing. A person who has battled at most a run-of-the-mill case of the flu, who has never had a bone broken, a wound stitched, an infection battled, an IV line blown, a catheter inserted—is not a patient. A person who has never spent more than an hour in thin and scratchy open-backed gown, has never had their urine and bowels examined and measured, has never awoken from anesthesia cold and shaky, has never cried in a parking lot due to relief or grief—is not a patient. A patient is a person, but a person is not a patient.

These people who claim ownership over the title of patient with the assumption that they will one day become a patient do not know what that experience will entail and do not want it. We patients do not wish it upon them. Being a patient is hard. Being a patient who survives is harder, and one who thrives, the hardest yet. Pretending to understand what it means to be a patient without ever having been a patient belittles the enormous struggle that patients undergo, and it is an inexcusable affront for the medical system's leaders to continue to engage in conversations about patients without including patients. 

If we are to foster patient engagement, we must break down the silos of care and bring representatives from all the concerned parties into the discussion in order to attain true communication. Because patients do not know what it means to be an emergency room doctor. Patients do not know what it means to be a primary care physician, or a hospital administrator, or a medical device maker. Key players such as these play siloed roles that require narrow focus in order to be successful at the task at hand. In order for the emergency room doctor to be the best emergency room doctor he or she can be need not calculate the cost of waiting room furniture and time spent on bill collection while treating the patient. The device maker, in order to attain highest and best use, need not contemplate the best way to educate parents about vaccinations and childhood behaviors. These silos will remain—and the healthcare system remain unchanged—as long as we continue to talk at one another instead of with one another.

The healthcare systems that will change the way healthcare is delivered will not be those relying on models and methods and manipulation to coerce patient engagement—the systems that incorporate patients into the infrastructure of their design and management of each department will see the greatest measure of success. In order to engage patients, we must include patients. An included patient is a compliant patient. And including patients—the constituency providers serve—thereby engages providers to put caring back into healthcare and work in collaboration to achieve better outcomes. 

#HCSM Review - Call for Submissions, Feb. 13 Edition

The Afternoon Nap Society will once again be hosting HealthCare SocialMedia Review, the blog carnival for those interested in health care social media. 

The Feb. 13, 2013 edition will focus on the following themes: the Health Affairs Briefing Reminder: New Era Of Patient Engagement held on Feb. 6 in Washington, D.C. and subsequently released edition of Health Affairs — and — the upcoming Rare Disease Day: Disorders Without Borders to be held worldwide on Feb. 28. Included within these focus areas are topics such as health literacy, drug development, healthcare costs, patient-centered care, and deliberations on what makes one a patient (are we truly ALL patients?).

Email submissions should include the following information:

Email Subject Line: HealthCare SocialMedia Review
Blog Title:
Blog URL:
Post Headline:
Permanent link to post:
Name, Username, Nickname, or Pseudonym:
Description or brief excerpt:

Deadline for submission is Tuesday, Feb. 12 at NOON. Email submissions to theafternoonnapper (at) gmail (dot) com.