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Above the Fold

The Wisdom of Patients – Social Media In Health Care

Apr 24, 2008• 9

By Jane Sarasohn Khan

People
— citizens, patients, caregivers, "consumers" — are early adopters of
social media in health,
compared to other industry stakeholders
including providers, plans, payers, and suppliers such as pharmas and
medical equipment companies.

This is but one of many findings in my report, The Wisdom of Patients, which was published yesterday by the California HealthCare Foundation.

The
report covers the origins of social media in the morphing of Web 1.0 to
2.0; the current state of social media in health; business models,
opportunities and obstacles; a glimpse into the fuzzy future of Health
2.0; and, profiles several of the most pioneering figures in
health/social media including Amy Tenderich of DiabetesMine; Matthew Zachary of the I’m Too Young For This! Foundation; Jack Barrette, founder of WEGO Health and formerly with Yahoo! Health; Neal Sofian of Resolution Health; Dan Hoch, MD, of the Harvard Medical School; and, Ben Heywood, CEO of PatientsLikeMe.

Jane’s Hot Points: So
many people informed this report. I interviewed over 30 people to
listen to a broad range of perspectives, and benefited from the peer
review of people like Matthew Holt, Scott Shreeve, and Dmitriy Kruglyak.
I thank them all. I am fortunate to have had the California HealthCare
Foundation sponsor this research. They are a visionary organization
that supports and celebrates new thinking in health, particular in the
area of patient self-care and technology.

I look forward to learning from THCB
readers’ own perspectives on this topic. Please comment on this blog
and we can have ongoing dialogue here on the present and future of
social media in health.

Wikipedia: Time to Pull the Plug

Apr 24, 2008• 24

By Craig Stoltz

Stoltz There
are many good reasons to deplore Wikipedia, not the least of which is
its authors’ cultish smuggery
about the righteousness of their cause
and the rightness of their content.

Of course there is also its internecine complexity of processes. The
documentation tracing the petty bitchery about an entry is often longer
than the entry that is produced. The international collectivist
negotiation over matters of “fact” is beginning to remind me of the
United Nations, but without the fancy New York headquarters.

A recent post by e-health blogger John Grohol left me steaming anew about the nature of the entire enterprise.

The piece details a series of exchanges between a Wikipedia editor
and Gilles Frydman, head of the non-profit cancer support community ACOR. The issue was the collective’s refusal to permit links to health-related support groups.

The post includes only one side of the story, and that filtered
through the articulate vitriol of Grohol. So I can’t vouch for the
details of the exchange. But it is accurate that Wikipedia does not
permit links to support groups. [See relevant policy excerpt at end of entry.] On reflection, this astonishes me:

1. Wikipedia is designed to harness the
collective intelligence of many individuals, an example of the the
classic web 2.0 “wisdom of the crowds.”

2. Online support forums are designed to
harness the collective intelligence of many individuals, the classic
web 2.0 “wisdom of the crowds.”

Wikipedia leverages the wisdom of the crowds one way. Online
support forums do so another way. But Wikipedia won’t assign value to
the other–in fact as a matter of policy it pointedly excludes it. Which
is to say: The power of the many is a powerful force to disseminate
knowledge–except when it’s not.

The hypocrisy is remarkable. To cite just one sad example: The
Wikipedia entry on amyotrophic lateral sclerosis (Lou Gehrig/Stephen
Hawking disease) is workmanlike. It includes references to mainstream
groups like the ALS Foundation. It even includes, god help us, a link
to that font of scientific dispassion, the Ride for Life.

Americans’ Confidence in the FDA Falls Sharply

Apr 23, 2008• 7

By Jane Sarasohn-Kahn

Confidence in the FDA has hit bottom.
The latest survey on trust in the FDA comes from Harris Interactive, who regularly surveys the public’s faith in the regulator.

Consumers
see the FDA’s #1 job as "ensuring the safety and efficacy of new
prescription drugs," cited by 61% of the public; however, 58% of people
have a negative view of the FDA’s role in this job, compared to only
35% who think positively about the FDA’s performance in this key role.

This latest drop in confidence in the FDA is driven by the Heparin scare, blogged about here.

Other factors eroding confidence in the FDA include toy safety, food safety,
the recent toothpaste scare, and perceived lags in approving necessary
drugs.

Personalized Medicine: Back to the Future

Apr 23, 2008• 6

By Scott Shreeve

Personalized Medicine

The type of sing molecular analysis to achieve optimum medical outcomes in the
management of a patient’s disease or disease predisposition,
Right treatment for the right patient at the right time.

As I have mentioned in several of my posts, I have been working on a
couple of health care finance reform initiatives over the last six
months. After banging away now for awhile, I am starting to see some
emerging ideas that are starting to bring out that old revolutionary
feeling of doing something that can have an industry changing impact.
The opportunity lies in the ongoing pace of innovation, with new forms
of health care delivery, with new models of health care financing, and
that fact that eh American public and politicians are slowly waking up
to the fact that our health care system is headed toward radical surgery (not the cosmetic kind).

So lets start this out by talking about the personalization of medicine.
This is typically thought of in a genetic sense, wherein people are
customizing medications and therapies based on your individual genetic
profile. Said in other words, the “Right treatment for the right patient at the right time”.
However, most consumers already assume Right/Right/Right is happening,
and more likely consider personalized medicine as a type of practice
delivery style. This is where the physician knows the patient
intimately, their social and demographic context, and the correct
diagnostic or therapeutic approach given the patient’s preferences that
have been learned throughout the relationship. The only physician I
have ever had whom I had this type of relationship with was Dr. Richard Jones who took care of me from age 6-21 (when the front office lady finally told me that I “really should find another doctor“).

An Open Response To HHS Secretary Mike Leavitt – Brian Klepper and Michael Millenson

Apr 22, 2008• 1

By Brian Klepper and Michael Millenson

A few months ago, the two of us – both long-time advocates for
transparency and accountability – posted separate comments on Secretary
Mike Leavitt’s blog. Brian asked Secretary Leavitt to square his
support of "Chartered Value Exchanges” with the attempt to block
release of physician-specific Medicare claims data to Consumers’
Checkbook, which wants to rate doctors. After a court ruled that the
data should be provided to the group, HHS appealed. Michael urged the
secretary to go beyond supporting Consumers’ Checkbook and use his
“bully pulpit” to promote sophisticated data analysis that could be
used to create national quality comparisons.
Secretary Leavitt graciously asked us to consider and comment on the
department’s proposed "Medicare trigger legislation" calling for the
release of physician performance measures. We are delighted to continue
the conversation.

First, let’s give credit where credit is due. We agree that the proposed legislation is a major step in the right direction.

Snooping at Britney’s Chart: Why Should Docs and Nurses Have Different Rules?

Apr 22, 2008• 7

By Robert Wachter

Robert_wachter Should doctors and nurses be subject to different penalties for
precisely the same infraction? Of course not. Are they? Sure. Just ask
Britney Spears.Britney was hospitalized at UCLA at least
twice in the past few years –
once when she gave birth to her first son in 2005, and again in early
2008 for psychiatric care. Both times, dozens of UCLA staff members
peeked at her medical records, despite having no clinical reason to do
so.

This voyeurism, of course, is hard wired into our DNA, and
we aren’t about to purge our inner paparazzis any time soon. But even
celebs have a right to keep their medical records private. Although the
Health Insurance Portability and Accountability Act
(HIPAA) has caused some real mischief, one of its beneficial effects is
that it put the issue of medical record snooping on our radar screen.
Whether the victim is a Hollywood starlet or your next-door neighbor,
it is just plain wrong.

Most organizations have hired HIPAA
police and done extensive HIPAA training with their staff.
Nevertheless, all the UCLA snoops were documented to have passed an
on-line HIPAA tutorial. When Britney hit the door, Inquiring People
just wanted to know.

Lest you think this is a UCLA thing, we had
a similar situation (with another famous actress) a few years ago, as
have dozens of other hospitals. In fact, human nature being what it is,
I can’t imagine this not happening – unless the rules are clear, widely disseminated, and strictly enforced.

Around the Web in 60 Seconds (Or Less)

Apr 22, 2008

By THCB Staff

VentureBeat: Emphasis Search, This Year’s WebMD, Raises 1M for Specialist Matching Service
Surgeons Meet in Second Life: First International Virtual Association Formed
(Hat Tip: Medical Quack)

WSJ Health Blog: Are General Surgeons the Primary Care Docs of the Operating Room? Aggravated DocSurg: "The harder the patient, the less the reimbursement we usually get."

WIRED SCIENCE: PETA offering $1 million prize to first scientist who can produce lab-grown meat in bulk.

Web 2.0h … really? "The OrgChart wiki is one of the coolest and most wonderfully dangerous features I’ve seen on a suit-and-tie site like Forbes.com."

Columbia Journalism Review: Dems Are Not Calling for Government Health Care. "After his abysmal debate performance" Stephanopoulos tries (unsuccessfully) to set the record straight.

DC City Council Pushes for Mandatory Universal Healthcare CoverageComing to a Hospital Near You: Mouth Swabs Swifty Diagnose Heart AttacksLAT: Men Don’t Get Healthcare Because They Don’t Want to Take it Off for Docs?

Tune Into The Kroll Webcast On The Security of Patient Data – Brian Klepper

Apr 22, 2008

By Brian Klepper

Exclusive to THCB: A couple weeks ago I pointed to a new study, commissioned by Kroll Fraud Solutions and conducted by HIMSS Analytics, that makes startlingly clear the gap between what most health systems are doing to comply with HIPAA, and what they need to do to actually safeguard the patient data in their possession.Tomorrow, Wednesday, April 23rd at 2PM EST, and again next Tuesday, April 29th at 2PM, EST, you’re invited to a 40 minute Webcast, moderated by Yours Truly, that goes through the issues. Jennifer Horowitz, the investigator from HIMSS Analytics, Lisa Gallagher, HIMSS Senior Director of Privacy and Security and Brian Lapidus, Kroll’s COO, will talk about how health care executives typically perceive the issue and how they report their own awareness and preparedness, in stark contrast to the threat and what happens when a breach actually occurs. I was a bystander in this energetic discussion, but it was an eye-opener for me.

If you’re at all involved in managing health system security or if you’re simply interested in the deeper realities of what’s necessary to protect patient data, this one’s a must. Join us for this revealing and important Webinar. Click here to get the study report and to register.

The Legacy of Dr. Jerome Grossman

Apr 21, 2008• 2

By Jane Sarasohn-Kahn

We’ve lost a major force for good in health care. Dr. Jerome Grossman, once CEO of Tufts-New England
Medical Center, passed away yesterday. He was only 68, an example of another good-man-dying-too-young.

Dr. Grossman’s ideas made big impacts on American health care for decades. He chaired many Institute of Medicine (IOM) panels and wrote countless pieces in peer-reviewed journals (including the seminal Crossing the Quality Chasm
report). He was one of the earliest proponents of analyzing quality and
medical outcomes in health care. He was an early champion and adopter
of information technology in health care.

Listen to a podcast of him
talking about aligning IT in health care for quality here from an IOM meeting held in 2000.
Most recently, at Harvard, he had been was the founder of the Center for Business & Government’s Health Care Delivery Policy Program, which he directed during the past seven years.
He had been co-authoring a book on innovative disruptions in health care with Clayton Christensen,
a fellow colleague at Harvard. It will be published by the end of the
year, and I can’t wait to hear Dr. Grossman’s voice again through his
writing.

Batalden updates Machiavelli

Apr 20, 2008• 4

By Paul Levy

There is nothing more difficult to
take in hand, more perilous to conduct, or more uncertain in its
success, than to take the lead in the introduction of a new order of
things. For the reformer has enemies in all those who profit by the old
order, and only lukewarm defenders in all those who would profit by the
new order, this lukewarmness arising partly from fear of their
adversaries … and partly from the incredulity of mankind, who do not
truly believe in anything new until they have had actual experience of
it."

This famous quote by Machiavelli is both a hearty
warning and a healthy piece of advice to those who seek to change a
political or social system. If those in today’s health care system were
looking for the equivalent piece of warning and advice, they might just
have obtained it from Paul Batalden,
Professor and Director of the Center for Leadership and Improvement at
the Dartmouth Institute for Health Policy and Clinical Practice. He
presented it to a small group of us today, in a talk entitled "The
challenge of leading the leading of the improvement of health care". I
present it with his permission. I think he has nailed the issue and
admire his ability to do it so succinctly.