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Tag: e-patients

Bentley & Stanton: Two UK docs talk about Health 2.0

Last week in London I met with two of the brightest lights in the UK’s community of physicians looking at Health 2.0. Annabel Bentley is the medical director and head of informatics at Bupa, the UK-based non-profit health insurer, which owns Health Dialog amongst many other activities, and is also a sponsor of the upcoming Health 2.0 Europe conference. Emma Stanton is a psychiatrist, round-the-world yachtswoman, and has just spent two years on assignment working with Sir Liam Donaldson the Chief Medical Officer in the UK, and is on her way to a Harkness fellowship in the US working with Don Berwick & Eliot Fisher. Not bad company!

Both will be speaking at Health 2.0 Europe on April 6–7 in Paris (and you should come too, you can register here!) and both of them gave me some gems about why they think Health 2.0 is important in this brief interview—captured in the glamorous location of the Bupa canteen.

Why America Needs a Patient-in-Chief

“These are exciting and very promising times for the widespread application of information technology to improve the quality of healthcare delivery, while also reducing costs, but there is much yet to do, and in  my comments I want to note especially the importance of the resource that is most often under-utilized in our information systems – our patients.
– Charles Safran MD, testimony to the House Ways & Means subcommittee on health [Emphasis added]

Quite current, yes? No: Dr. Safran said those words in June 2004. And not much has changed.

My physician Dr. Danny Sands, mentored by Dr. Safran and colleague Warner Slack MD, heard similar sentiments from them decades earlier. And where are we today? Patients are still untapped, and we have the worst dysfunction in the history of healthcare. Perverse incentives and unintended outcomes are the rule, not occasional glitches, as costs spiral up and outcomes don’t.

As Consumer Reports recently said, in the ten years since the Institute of Medicine’s classic report To Err is Human documented as many as 98,000 deaths a year from preventable medical error, “not much has changed.”

These are signs of a system that’s governed without input from its customer – the patient.

Patients have the most at stake, but they’re invisible in Washington. We need to link them in; we need their passion, their commitment, their very-motivated contributions.

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The five things to pay attention to in 2010

There’s no doubt that despite my thoughts that Obama wouldn’t (and shouldn’t) have pushed health reform in 2009, it was a very big year for health care. Death panels, public options et al—one hundred thousand visits to THCB in August don’t lie.

So what should you look for next?

  1. The finish is the start: It looks like some version of the Senate bill will be a done deal by sometime late January. That means that there’s about two years of health care industry players figuring out what it all means. The biggest two questions are; what will the types of plan sold in the exchanges look like? (high deductible with some preventive care thrown in is most likely), and what will the cuts and changes in Medicare payment actually look like in practice? (More of the same or real re-alignment around some kind of bundling). All these changes need reactions from the incumbents to reorganize around the new revenue streams.
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ACOR, Health 2.0 in the US & Europe: Gilles Frydman tells all

Gilles Frydman is one of the leading ePatients. He started and runs ACOR (Association of Cancer Online Resources) and has discussed the role of engaged patients with rare diseases at the last few Health 2.0 Conferences. We’ll be hearing more from Gilles in the US this year, but first we’re inviting him to present at Health 2.0 Europe. His twitter name (@kosherfrog) reveals Gilles’ ethnic and national background, so we thought he was a very appropriate person to discuss both the future of online patient activism, and the Health 2.0 scene in the US and Europe.

Matthew says: Gilles, you’re best known for the ACOR list-servs which now see over 1.5 million emails a week go out in around 150 different cancer groups. Can you tell us how it started?

Gilles says: In 95 my wife was diagnosed with breast cancer. She came home and told me of the diagnosis and I immediately went on the Net to find information about the disease and treatments

Matthew says: And what did you find?

Gilles says: Within 30 mins I had the BREAST-CANCER list and joined it. I didn’t follow protocol and jumped right in and asked about the diagnosis and what we were told was the treatment for it. Within 2 hours I had enough info to call back the surgeon and tell her we were going for a second opinion and that we would wait for the surgery she had told us was absolutely necessary. She “fired us” on the spot. Because we went for a second opinion!

Matthew says: I’m not surprised. Probably might happen today too

Gilles says: But as a result of  what I was told my wife didn’t have chemo. She didn’t have a radical mastectomy. She didn’t have brain, liver and bone scans. All of which would have been TOTALLY USELESS for the type of BC she was diagnosed with. Thanks to informed patients, she just had a lumpectomy and radiation. No piece of cake but MUCH LESS than chemo. So, that started me

Matthew says: So is that a typical interaction on ACOR?

Gilles says: YES. But ACOR can go into incredible depths. Not just pure info but also deep info mixed with profound human feelings

Matthew says: Can you give some examples

Gilles says: Just yesterday on one of the pediatric lists, a mother was writing about her son’s latest situation where all the doctors have now told them there is nothing more to be done. In short the woman writes about what can only be the worse possible situation for a mother, but she does so in an incredibly rational fashion.

Matthew says: What’s the scale  of ACOR activity now?

Gilles says: ACOR is a little under 60K active subscribers, over 165 groups, from 60 members to 3,000. Some of the groups generate close to 200 messages a day

Matthew says: What does it cost to run ACOR in both money and time, and how is it financed?

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Health 2.0 Tools: The power of Twitter

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The power of Twitter is real kids, and not for what you think. Used properly Twitter is an information filter. Exhibit A is what happened to the Von Schwebers who run PHARMASurveyor. They were a huge part of the Tools Panel which featured interoperation among 8 members of the Health 2.0 Accelerator at Health 2.0 a couple of weeks back. Then last week they were at an AHRQ conference on Drug Interactions when this happened. Erick von Schweber’s email picks up the story ..

The Chief Medical Officer of Express Scripts is doing his talk, about halfway through, and then tells this rather academic audience of scientists and researchers that there’s something new they need to attend to. It’s called Health 2.0, he says, and he puts up a PowerPoint slide with screen captures from WebMD, HealthVault, Healthline, DoubleCheckMD, etc. Then he tells the audience that the prior week he saw tweets about something new in the space, so he checked it out. He says this is the next major leap ahead in drug safety. So up comes a series of four slides, all screen grabs of PharmaSURVEYOR. And he calls us the Accelerator and explains what we do, disclaiming that he had no knowledge that we’d be there at the conference (I had moderated that morning’s session on making DDI evidence more relevant to patients and physicians; Hansten and Horn were my speakers, the guys who introduced the term “drug interaction” in the mid-sixties). He tells the audience that they must go to PharmaSURVEYOR as well as begin thinking in terms of consumer generated healthcare.

Now it just so happens that the Chief Scientist of Express Scripts but not the Chief Medical Officer had been to Health 2.0 and (I assume) seen the Tools panel demonstrations. But, and this will amaze no one, busy executives at big corporations don’t always immediately communicate all of their learnings with each other. So how did the Chief Medical Officer find out? He probably saw a re-tweet of the #health2con hash tag. That, ladies’n’genelmen, is how our kids is learning these days.

And do you want to see the incredible tools panel from Health 2.0 which contained both the accelerator integration project (in two parts), the debut of Keas, and Eliza showing the first Health 2.0 marriage? Funny you should ask.

Why Standards Matter (1): The True Meaning of Interoperability

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Americans are generally skeptical of words that otherwise intelligent and articulate people can’t pronounce.  “Interoperability,” like nu-cu-lar, is one of these. After a while, these words can take on a mystique all their own.

But interoperability is a hugely important word in the context of today’s ongoing debate about the use of EHR technology by physicians, hospitals, and patients too. The federal government is going to provide billions of dollars to encourage today’s fragmented health care providers to convert from mostly paper to mostly computerized information systems. It is critically important for these systems to talk with one another. We want health data to flow between and among these systems and to be, well, interoperable.  And it isn’t now.

So how can this word be so difficult to put into action?  Here’s a clue: a lot of people are confused about its meaning.

Continue reading “Why Standards Matter (1): The True Meaning of Interoperability”

Online behavioral health on American Well’s platform, and a hint at Cisco/UHG

As usual I am way behind on tech and Health 2.0 news but here’s one that was “thrown out with the trash” late last week because the service went live on Saturday. American Well has has added TriWest Healthcare Alliance as a client on its online service. Most significantly this is for behavioral health care (psychological counseling et al) for military families covered under Tri-Care—the program for the families of service personnel.

Given what the military has been through in the last decade you can imagine how badly this is needed. And it’s an extension of the current primary and urgent care services already being delivered online.

In fact beyond American Well there are a number of even smaller companies starting to aim at the behavioral health online market—which has a strong tradition of success in telemedicine and is ripe for expansion into the online arena.

However, where I’m really late is that a couple of weeks back Cisco—which does higher-end telemedicine—announced a program with United Healthgroup to provide its HealthPresence technology in mobile trucks for underserved populations. United’s Optum unit also recently announced that it too would be using American Well. So we’re seeing an extension of the use of both higher tech and web-based online care, and that for the first time health insurers are taking this very seriously.

Continue to watch this space as it looks like finally the technology is ready and the payers are finally coming on board. And (ahem) you’ll hear much more about this at the Health 2.0 Conference in San Francisco on October 6–7.

Decoding “The Social Life of Health Information”

The Pew Internet/California HealthCare Foundation report, The Social Life of Health Information, is packed with new findings from a survey of 2,253 adults, including 502 cell-phone interviews, conducted in either English or Spanish.

We spent a bundle of money on making this a random sample of the U.S. population, but guess who got a call on his cell phone?  None other than e-patient Dave!  He had never talked with me about the survey questions or reviewed a draft, so I decided to keep his interview in the mix, but he surprised the heck out of the interviewer when he finished the sponsor identification for her at the end.Continue reading…

An Open Letter to the New National Coordinator for Health IT: Part 3 — Certification As The Elephant in Health IT’s Living Room

6a00d8341c909d53ef01157012476e970b-pi In the first and second parts of this series we talked about how and why there is no universal definition for the term “EHR.” Instead there is a legitimate, growing debate about the features and functions that “EHR technologies” should offer physicians seeking to qualify for HITECH incentive payments. We explored the layers of network technology, suggesting that federal regulators should “separate the data from the applications.”

We also argued that there is much to learn from development platforms, recently and in the distant past, that have used standards to open the aperture of innovation. The best of these standards have reflected the experience of what works rather than specifying how to make it work. Defining the standards for data, devices, and network technologies too restrictively could choke off innovation, rendering HITECH’s offerings whose expense and complexity are a barrier to, rather than an incentive for, adoption by physicians. Incoming National Coordinator for HIT David Blumenthal, MD seems to have been considering just this concern when he recently wrote:“… [M]any certified EHRs are neither user-friendly nor designed to meet HITECH’s ambitious goal of improving quality and efficiency in the health care system. Tightening the certification process is a critical early challenge for ONCHIT.”

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Participatory Democracy, Participatory Medicine

Susannah Fox

More than half of the entire adult population in the U.S. used the internet to get involved in the 2008 political process. Blogs, social networking sites, video clips, and plain old email were all used to gather and share political information by what Lee Rainie has dubbed a new “participatory class”:

  • 18% of internet users posted comments about the campaign on a blog or social networking site.
  • 45% of internet users went online to watch a video related to the campaign
  • Half of online political news consumers took advantage of the “long tail” of election coverage, visiting five or more types of online news sites.

And guess what? This participatory class of citizen is not ready to go back in the box. Many people expect to stay engaged with the Obama administration and you can bet that the rise of mobile applications will accelerate this trend toward engagement for lots of Americans.

My new survey data shows that not only is there a participatory class of citizen, but there is a participatory class of patient.

Most people with a health questions want to consult a health professional – no news there. Second most popular choice: friends and family. Third choice: the internet and books (yes, books are still popular, even among internet users!). But participatory patients (aka, e-patients) are using the internet in new ways. They not only gather information, but seek out expert opinions, such as the “just in time someone like me” who holds the key to their situation.

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