Another very interesting panel at Connected Health Symposium 2009 - this one on PHRs, with Peter Neupert from Microsoft, Roni Zeiger from Google Health and Phil Marshall from WebMD, moderated by John Moore of Chilmark Research (post linked to is relevant to this panel discussion). Have a listen:
Here's the audio of a very interesting panel discussion at the Connected Health Symposium. The audio quality isn't the greatest, but the content is terrific. Listen/Download.
Moderator: Robert Hanscom, JD, Vice President, Loss Prevention and Patient Safety, CRICO/Risk Management Foundation - John Glaser, PhD, Vice President and CIO, Partners HealthCare - John Halamka, MD, CIO, CareGroup Health System; Dean for Technology at Harvard Medical School; and Chair of the US Healthcare Information Technology Standards Panel (HITSP) - Peter Neupert, Corporate Vice President, Health Solutions Group, Microsoft
- Jim Tosone, Director, Pfizer HealthCare Informatics
Here's the tweetstream for the Connected Health Symposium 2009, happening October 21-22 in Boston. Check back throughout the conference to see what's going on, and jump in on twitter if you like; the hashtag is #cch09. Hope to see you all there. The tweets will be archived here.
In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:
Have the right to our own health data
Have the right to know the source of each health data element
Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
Have the right to share our health data with others as we see fit
These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.
So, my first reaction: This is obvious stuff, right? Say what you will about The People's Republic of Massachusetts, local law requires prompt provision of medical records to patients at nominal cost, and in the vast majority of cases, the rules are followed and everyone's happy. In my own little world here in Boston, MA, The Hub of the Universe, I've never
had a problem getting health data -- or pathology slides, or anything
else -- released to me or shared with other clinicians when needed. But, then, I suppose I'm an outlier: my physician is part of a totally wired multispecialty group practice, which has been wired for years and years; and I'm both an industry guy and a lawyer, so I know how to speak up when I need something, and perhaps folks are more apt to listen. (Reminds me of the semi-apocryphal story of a classmate of mine who saw the "law student" stamp across the top of his medical chart at Mass. General years ago.)
Upon reflection, I realized that not everyone -- whether in Massachusetts or elsewhere -- has the same ease of access, and while the declaration is sort of a no-brainer, it is important to put it out there, and I'm happy to join the folks who got this thing going, including Adam Bosworth, David Kibbe, Jamie Heywood and Gilles Frydman (forgive me for leaving other names off this short list). I discussed the Declaration with Gilles Frydman, who agreed that it is just a first step, but a critically important one to take while the national dialogue is focused on electronic health records.
Additional steps down the path will have to include other common-sense guarantees that are already enacted into law here and there, including guarantees concerning the rights of patients to obtain test results through their physicians or otherwise, the ability of patients to correct errors in their records (so we don't have easily-accessible garbage), as well as easy access to interoperable electronic health records and non-tethered personal health records.
There are good reasons why some physician notes in some patient records should not be shared with patients or family members (a subject for another day), but this Declaration is focused on data -- not free-text notes -- so those notes would not be covered.
What other rights along these lines would you like to see guaranteed?
Update 6/27/09: Many supporters have signed onto the Declaration. One notable exception: Jen McCabe, who was in on some early drafts, but feels strongly that the darn thing doesn't go far enough. Jen has blogged about her thoughts on the subject and has laid out her own more comprehensive patients' healthcare information rights manifesto.
I agree with Jen's sense that the Declaration is a first step, a baby step, and that there's a lot farther to go. However, I see this first step less as a near-futile gesture, and more a real first step, a way to to get the conversation moving at a time when it can converge meaningfully with parallel conversations about implementation of ARRA / HITECH Act / Son of HIPAA provisions. As the old saying goes: A journey of 1,000 miles begins with one step.
Here's what I would like to see providers who are prepared to sign onto the Declaration do as a next step: Without waiting for government action, initiate a campaign to amend their HIPAA Notice of Privacy Practices (NPP) (perhaps now, perhaps as part of the NPP amendment that will have to be rolled out once the Son of HIPAA regs are finalized by next February) to incorporate into a standard form contract that binds the providers the next steps that Jen calls for now and that most, if not all endorsers of the Declaration would also agree are necessary and important. This simple, yet far-reaching step, would have a greater impact than an endorsement by a provider organization. These should include guarantees of the "common sense" rights articulated above as well as the following patient rights:
The right to correct erroneous data -- and a mechanism for noting disagreements with clinicians
The right to control access to data -- access for all purposes: care, payment, secondary use (including clinical research and marketing)
In the past, non-standard NPPs were drafted and distributed by patient advocacy groups for patients to use and add to their providers' NPP forms. However, patient-specific NPPs are unadministrable. In order for this to work, there needs to be adoption form the provider side, either as a result of new regulation, or as the result of a populist follow-on to the Declaration.
As I wrote above: Please join in; what other rights would you like to see guaranteed as part of the Declaration? What are your thoughts on this approach?
June is bustin' out all over . . . . Lord knows my nose knows it, thanks to all the pollen in the air these days. Check out the classic movie rendition of this set piece (well worth the eight-minute investment), let your coffee and/or antihistamines kick in, and then let's dive into the past week's medblogging, loosely categorized into insights of patient bloggers, provider bloggers, bloggers I've met in real life (the number keeps growing), bloggers following the money trail through the health care thicket, and bloggers who are or should be dancing and/or shirtless (watch the whole movie clip . . . on second thought, let's leave it at dancing).
Last time I hosted Grand Rounds, we delved into the origins of Valentine's Day, so even though we're a couple weeks shy of the vernal equinox, since June is bustin' out all over, the historian in me feels the need to touch on an ur-Spring nugget or two before we get going. Where do these celebrations of Spring come from?
Attis was a Phrygian god, whose annual death and resurrection were mourned and celebrated at a Spring festival. (On the other hand, the death and rebirth of the Sumerian Tammuz was a summer solstice thing rather than a vernal equinox thing.) James Fraser, in The Golden Bough, wrote:
The annual death and revival of vegetation is a conception which readily presents itself to men in every stage of savagery and civilisation: and the vastness of the scale on which this ever-recurring decay and regeneration takes place, together with man's most intimate dependence on it for subsistence, combine to render it the most impressive annual occurrence in nature, at least within the temperate zones. It is no wonder that a phenomenon so important, so striking, and so universal should, by suggesting similar ideas, have given rise to similar rites in many lands.
What I best remember from The Golden Bough, though, is the tale of the king-for-a-year, who ascends the throne as a result of a cultic regicide, and ends his term the same way. Great stuff.
For further reading linking The Golden Bough, The Holy Grail, Wagner's Parsifal, and T.S. Eliot's The Waste Land, check out Derrick Everett's article on The Waste Land.
I'm not certain that Rogers and Hammerstein had these themes in mind when writing Carousel. Heck, who knows what they had in mind; they threw in a happy ending that wasn't in their source material (but hey, that's show business). You, dear reader, certainly didn't have these themes in mind when you tuned in to today's edition of Grand Rounds. Nevertheless, on with today's show.
Provider Bloggers
At Musings of a Distractible Mind, Dr. Rob discusses Atul Gawande's recent New Yorker piece on health care cost variations across the country
(a good read, well worth the time), which focuses on McAllen, TX, a
small border town that consumes far more than the average annual per capita
amount of health care services. Gawande loops in the Dartmouth Health
Atlas folks, asks the hard questions about physician-owned facilities and financial incentives, and concludes that outfits like Geisinger, Intermountain, Kaiser Permanente and Mayo -- not-for-profit integrated delivery systems with salaried docs -- have the model we should strive to emulate systemwide. Dr. Rob recounts his own experience with physician-owned
facilities. His conclusion is a folksy twist on Gawande's:
How
do we fix it? There are lots of good answers, and lots of dumb ones as
well. The bottom line is the bottom line, though. How you pay docs
will determine what happens. It’s America, after all. It’s what makes
us great. Right?
Right. The thing is, guys, we've known this for at least forty years.
ACP Hospitalist reports on Sid Wolfe's new Public Citizen campaign to get hospitals to step up reporting of physician wrongdoing. Bob Wachter, at Wachter's World, delves deeper into the problem, and says:
I’m proud to say that over the past five years, my hospital (UCSF Medical Center) has taken Leape’s challenge to heart, withdrawing clinical privileges (and filing accompanying NPDB reports) in several cases for behavior that, I’m quite confident, would have been tolerated a decade ago. This is progress. As Kissinger once said, “weakness is provocative.” As more hospitals take this tougher stance, I think we’ll see the boundaries of acceptable behavior shift everywhere. And patients will be safer for it.
Bongi, at other things amanzi, recalls a suboptimal experience in his training, when the "see one, do one, teach one" approach was reduced to "read an article about one, do one immediately afterwards."
At Providentia, Romeo Vitelli looks at the historical precursors to Jenny McCarthy and the current crop of anti-vaccinationists.
NurseAusmed recounts difficulties in handling patient communications and managing patient expectations at Nursing Handover.
How to Cope With Paintakes
a page from a book offering guidance to those who have lost their
spiritual way and turns the advice to use for those facing physical,
rather than spiritual, pain.
Web 2.0 meets the health care establishment, and KevinMD [IRL] observes that since health care is largely a business, this should not be surprising. For a window into social media use by health care provider organizations, check out healthsocmed.
The anonymous author of Notes of an Anesthesoboist says it's hard for women doctors to make friends . . . perhaps they should introduce themselves as drug pushers instead?
Big Pharma also always follows the money, and David Williams, at the Health Business Blog, remains perplexed over Pharma's failure to engage with the public via twitter. (GSK has already responded to David's post, but in a way that doesn't exactly undercut his point.) For a window into Pharma's engagement with social media, look no further than Shwen Gwee, who organized the Social Pharmer unconference in conjunction with the HealthCamp Boston unconference I co-organized in late April. Speaking of social media, feel free to follow me on twitter: @healthblawg.
Last week, I took a look at the proposed Medicare Inpatient Prospective Payment System (IPPS) updates for FFY 2010. Among other things in the rule (including payments cut to the bone), I was surprised to see tucked away in there a tacit acknowledgement that the whole "no pay for never events" thing isn't really saving anybody that much money.
Lots of hospitals are touting new private rooms these days. Seems to help patient care (lower infection rates, better sleep, more privacy), but despite the benefits, Jeffrey Seguritan at nuts for healthcare observes that the private room is being pushed by the AIA, and wonders whether health care dollars really ought to be spent these days on capital projects such as these. (My brief response: these days, they really aren't, given the tight financial markets).
How do you [reduce health care costs dramatically]? Here's my theory. You can do more to affect health care costs by getting 10,000 people to change their lifestyle habits than you can by getting a few hundred docs to change how they document and collect data and prescribe some pills.
So here's what you do. You bribe the public. People are inherently lazy, but they respond well to piles of money.
For a fuller introduction to the X Prize competition: Scott Shreve [IRL] posted his twitterview on the X Prize with Bertalan Mesko (@berci) at Crossover Health. Learn more about it there.
The big HITECH Act pot of money that everyone in health IT is itching to get their hands on is going to have some strings attached: chief among them are going to be definitions of "meaningful use" and "certified EHR." Them that are likely to be certifying -- CCHIT -- have been the target of some possibly well-deserved pot-shots, and the gloves have come off. See Gilles Frydman's [almost met IRL at the Health 2.0 conference in
Boston a month or so ago] framing of the debate at e-patients.net and John Moore's [IRL] take at Chilmark Research.
Health technology research and development yielded two bits of news this week: FDA approval of a handheld ultrasound unit, via Vijay Sadasivam's scan man's notes, and Ves Dimov's post at Clinical Cases and Images on the Rovio - a WiFi-enabled mobile webcam, which may be more attractive to medical users given the recent study that found patient satisfaction, physician satisfaction and diagnostic agreement (measured both between face-to-face and virtual vists, and between two face-to-face visits) to be similar for face-to-face and virtual visits. (Yesterday's Boston Globe took a closer look at this study, virtual visits in general, and American Well in particular.)
The health IT crowd is working on interoperability and portability of health information. Google Health is one of the platforms that may enable folks to reach this holy grail. Brian Dolan at mobihealthnews says that Google Wave, an open-source tool for communication and collaboration, looks like a killer tool for enabling Google Health to do more in terms of provider-provider and patient-provider collaboration.
Evan Falchuk's observation at See First on prevention: it ain't cheap; treatment of preventable disease is more expensive than the savings from avoided disease and complications, so we need to be talking about more than cost-effectiveness.[Supposed to meet IRL soon.]
Patient Bloggers
For
some reason, diabetics are very well-represented among Grand Rounds'
usual suspects. This week, they're turning into media critics as well,
following President Obama's nomination of Sonia Sotomayor to the
Supremes. Amy Tenderich [who I also almost met IRL at Health 2.0] touched on the media frenzy regarding the
nominee's Type 1 diabetes at The Diabetes Mine, as did Six Until Me's Kerri Morrone Sparling. Not to leave Type 2 diabetes unattended, Rachel Baumgartel offers tips for the newly diagnosed Type 2 diabetic at Diabetes Daily. (For those who care to immerse themselves in The Politics of the Sotomayor Nomination, the good folks at SCOTUSblog say come on in, the water is fine.) For a taste of the difficulties faced by some diabetics traveling through airports with needles and curious liquids, head on over to Tim Brown's post at Shoot Up or Put Up.
At Getting Closer to Myself,
Leslie offers her reflections as a twentysomething with auto-immune
disease, specifically a feeling of how she can't go home again to an
idealized summer retreat.
Barbara Kivowitz describes a good day at In Sickness and In Health, and invites all of us to do the same.
Bloggers Who Are or Should Be Dancing
Val Jones [IRL] is pretty pleased with her high-deductible health plan (HDHP) - cash-only PCP combo. I hope her husband is dancing after the office procedure scheduled on a dime last weekend . . . and I hope Dr. Val has all the releases for those photos stashed away somewhere. It's a good solution for those with no chronic conditions, young kids, or other sources of regular interactions with the medical-industrial complex. And no less a luminary than Clay Christensen says we're 5-6 years away from the tipping point (to mix metaphors) on HSA/HDHP combos, at which time we're likely to see a significant change in the economics of healthcare (with or without significant movement in DC). For one example of where this may play out, see my recent post on retail health clinics.
InsureBlog's Bob Vineyard shares good news for Cuba's pre-op transsexual population: coverage is here. Surely cause for someone (patients, if not bloggers) to dance.
Well, that's the last dance . . . for this week. See you around the medblogosphere, and next week at the next edition ofGrand Rounds.
This week's edition of Grand Rounds is up at Evan Falchuk's See First. Welcome to the party, Evan.
Next week's "June Is Busting Out All Over" edition will be right here at HealthBlawg. Please write your post's URL on the back of a twenty-dollar bill and mail it to the address on my home page (apologies to Click and Clack) or send it to me via email at david AT harlowgroup DOT net with "Grand Rounds" or "Twenty Bucks" in the subject line. Please include the post title, blog title and URL, and your name or nom de blog (or that of the author if not you) as well.
HealthCamp Boston and SocialPharmer Boston are taking place today. For those of you on site, please live tweet using hashtags #hcbos or #socpharm. For those of you following along at home, please follow those hashtags in your reader of choice, or right here. Separate windows are provided for #hcbos and #socpharm (each will have more than one thread, so mashing them together seemed too unwieldy). The twitterstream will be archived here for future reference. Information on audio and video archives will be available via the event website at some point in the future.
HealthCamp Boston and SocialPharmer Boston are happening tomorrow, April 21. If you can't make it in person and would like to follow the events of the day, check back here at HealthBlawg for CoverItLive windows: one will be set to follow the #hcbos twitterstream, the other, the #socpharm stream. If you are on twitter, use your reader of choice. The tweets will be archived here for future reference.
Users of Google Health can now import their CVS prescription data into their PHRs. Not the first pharmacy to hook up with Google Health, but perhaps the largest. The more info there is in a PHR, the better; incomplete records only lead to misinformation or lack of information, and when we're talking about prescription medications, that can lead to unfortunate interactions and an additional burden of illness. Until human nature and the medical-industrial complex can both be sufficiently tweaked to yield more rationality most of the time, the aggregation and sharing of data in this fashion (if it can be done in a comprehensive, secure, and auditable manner since, after all, we don't trust people to remember what color their pills are and report accurately to a string of docs and pharmacists, much less to update their own prescription drug data on line) is, on balance, a positive development. Google Health does not have access to all pharmacy data in the country yet, but give them time, and they will.
TechCrunch recognizes that privacy issues abound here, as they do for the rest of Google Health. For me, these issues are heightened by the fact that, as far as I know, Google still insists that it is beyond the reach of HIPAA and the ARRA/HITECH son-of-HIPAA provisions. For me (as for most), these risks may well be outweighed by the benefits. (I think my medical records are of less interest to inquiring minds than those of Britney Spears or the "octomom" -- but I recognize the concerns of folks with medical conditions that info on chronic conditions may get into the wrong hands/be used inappropriately, e.g., for employemnt decisions, though I think the solution to that problem should be in improvements to employment discrimination law.)
The privacy nuts and technophobes out there won't sign up for this service, despite the (mostly) good privacy track record of the financial industry; at the other end of the spectrum, the early adopters are already all over this. My expectation is that general adoption is going to depend more on easy porting of medical records beyond prescription histories. As e-Patient Dave so vividly demonstrated recently, unfortunately, we're not quite ready for prime time in that department. The porting may work, but the data that gets ported may or may not be accurate and up to date. I'd be interested in learning more about the accuracy of the data that gets imported to the Google Health from the various pharmacy systems before being willing to rely on this system as an improvement over the status quo.
A tip of the hat to Richard Dale, the Venture Cyclist, for pointing me to the TechCrunch post today.
Welcome to Health Wonk Review, where everyone is above average. We enjoy above-average
health care costs per capita, above-average uninsured rates, and above-average
obsession with health care reform. That's what it's like today in
America. Our president has said, Change has come to America. In the
words of Robert Hayden's [American Journal]:
america
as much a problem in metaphysics as it
is a nation earthly entity an iota in our galaxy
an organism that changes even as i examine
it fact and fantasy never twice the same
so many variables
LikeSchrodinger's cat, America's
health care system seems to change in the changing light as we examine it; one
thing we can all agree on is that it needs some work.
We begin with some broad brush strokes on form and amount of spending:
One cost, no matter what the payment system, is labor. Lynn
Nicholas, President of the Massachusetts Hospital Association writes about some pending changes to labor laws that might make it easier for labor to unionize,
presenting the favored position of a non-union shop as one of worker, rather than employer, preference. See Keeping Communication Lines Open
in the Healthcare Labor Debate at CommonHealth, the Massachusetts health care reform blog of WBUR (a Boston NPR affiliate).
Who Will Pay for Prescription Drugs? asks Adam Fein at Drug Channels. CMS projections show that the government will have a very strong hand in managing retail drug spending and shaping the future of drug channels. How will that affect pricing and R&D? Richard
Fogoros (DrRich)presentsA Brilliant Plan For Preserving
Pharmaceutical Progressat The Covert Rationing Blog, saying, The title says
it all. Can we have our cake (drug price controls) and eat it too (continue
drug innovation)? DrRich says, yes we can! Check out his proposal.
My dad used to say he wanted to listen to a radio station that broadcast only good news (not Good News, just good news). Merrill Goozner, of GoozNews, suggests this week that there ought to be a journal dedicated solely to publishing negative results -- as soon as they're known -- as he is all hopped up due to delayed publication and/or suppression of data on adverse effects of drugs. These issues in general, and a couple of current cases he discusses, have policy implications for the new leadership at the FDA.
At InsureBlog, Mike Feehan has a piece on
Wellpoint's recent spinning off of its in-house PBM, About Wellpoint's PBM Auction, and future implications for prescription costs.
At the other end of the spectrum, Health Access WeBlog's Beth
Capell
asks What are gold-plated benefits
anyway? An interesting question, now that the president has indicated that he is open to signing a bill including taxation of health benefits. (As an aside, Obama's approach -- White House Health Care Summit with stunning transparency, concluded with an invitation to Congress to send him a bill consistent with the policies he articulated throughout the campaign -- is both a refreshing change from the Clinton years and a strategy likely to insulate him from criticism on the exact contours of the plan when it reaches his desk.)
Jared
Rhoads
presents Less government, not more at The Lucidicus Project, discussing the recent report by Physicians
for a National Health Plan (the single payor proponents). I spoke with PNHP's David Himmelstein a little while back, and while he has a compelling argument for adopting a single-payor plan in this country (the savings would be impressive), I still believe that the more pragmatic approach is to make incremental changes in the system before us.
Taking our cue from Dr. Himmelstein, we begin a bit of a grand tour by visiting our neighbor to the north.
At BNET Healthcare, Ken Terry writes that Massachusetts Needs to Deal With Primary Care Crisis, saying that while proponents of the healthcare reform program in Massachusetts tout it as a model for the entire country, and detractors point to the program's rapidly rising costs, neither side is really focusing on the need for better access to primary care in the state. He also observes that retail clinics are expanding in Massachusetts, and community health centers are pulling in federal cash for expansion. One observation: retail clinics in Massachusetts are not currently expanding as they cannot find nurse pratitioners to hire. Also, on a national level, Minute Clinic recently shuttered 90 sites for the season. Even if they were growing, they are no substitute for primary care.
Here at HealthBlawg, I recently interviewed the CEO of Satori World Medical, a medical tourism company that offers a twist: through an HRA, it funds patients' future years' insurance premiums with a portion of the savings their employers or insurers enjoy as a result of their overseas medical procedures.
Closer to home, many doctors are now leery of online ratings sites, and have started using a service, Medical Justice, to get patients to agree not to post negative reviews as a condition of being taken on as patients. Dmitriy at Trusted.MD has been following this issue for a while and offers some insights.
Care management is also the theme of Julie Ferguson's post on The effect of obesity and other comorbidities on workers comp at Workers' Comp Insider. In light of a new report which shows that workers comp medical claims can cost three times as much when the injured employee is obese, she makes the case for breaking down the silos between employer-based occupational health and general health programs.
Using the cost per doc put out by Wal-Mart, John
Moore does some calculations, and shows in his post The HITECH Challenge: Is $19B
Enough to Drive HIT Adoption at Chilmark Research that docs getting wired and getting HITECH incentive dollars will be engaged in a money-losing proposition -- they'd actually be better off financially not implementing EHRs and getting hit with the penalty a few years down the road.
Speaking of Wal-Mart, it bears mentioning that this day in history marks the anniversary of the Civil War Battle of Bentonville (No, not that Bentonville; the battle was in North Carolina.)
Shahid
N. Shah
presentsClient/Server vs. ASP/Web-Based in
Healthcare IT posted at The Healthcare IT Guy, since with the HITECH Act and stimulus bill making news,
many users are asking if they should purchase software and use it on premises
or if they should use a "cloud" package or an ASP/web-based solution.
In addition to jump-starting HIT, current legislation is giving a boost to research funding. One pot of funds is time-limited; Glenn
Laffel looks at Beaker Ready projects ready for NIH funding at Pizaazz.
In The Color of Money: What Sort of School Doesn't Pay Its Faculty to Teach? Roy Poses at Health Care Renewal puts academic medicine on the spot, saying that some leaders have abandoned core missions in favor of collecting "taxes" from medical faculty, which makes faculty more dependent on commercial interests. Strong words indeed, and an issue that needs to be rolled out front and center together with other payment issues if there is to be a wholesale revamping of health care financing in this country.