Once the world’s information was put into context, we looked beyond the keyboard, and collectively shifted to people. We focused on social context by asking questions like: Who are you? How are we connected? What is on your mind? What matters to you?

Making the Internet more social enabled people to share their real name, likeness, voice, and the things that they are connected to. Now we always have an understanding of who is talking, who and what they are connected to, what they are saying, and to whom; through understanding identity and social context we have achieved greater openness as a society.

DAVE MORIN

Internet Entrepreneur; Co-Inventor, Facebook Platform and Facebook Connect

In “Context Is King“

Two of the last three posts on this blog got conversations going on steroids. In both instances the genesis of the overdrive is a commenter that appears under the username DarthMed. Surprisingly, DarthMed is the ONLY commenter in both conversations who didn’t offer a link to a website where we can understand a bit about his/her background and expertise. This is an immediate red flag in my world. Anonymous comments in blogs are IMO not acceptable. As Jaron Lanier writes in his latest book, “You are not a gadget”:

“Anonymous blog comments, vapid video pranks and lightweight mashups may seem trivial and harmless, but, as a whole, this widespread practice of fragmentary, impersonal communication has demeaned personal interaction.”

One of the points I make most often about ACOR success in promoting high level conversations is that we do not tolerate anonymous conversations. When you discuss issues that often have life and death implications you must use your real name. That is a pre-requisite for trust.

In the case of DarthMed, this anonymous avatar has made all kinds of strong statements, usually interspersed with numbers used as sledgehammers, making it appear that the comments are based on uncontrovertible facts. Just look at these 2 examples: “…the remaining 95% of “patients” out there are not motivated to become informed…”, “Why spend $10M setting up a online support group for 1,000 active patients around the country, when with that money we could fund 10,000 regional support groups (touching, say, 100,000 patients) where people could actually chat with each other, share drinks and actually exist in the same space.”

So, Yannick Medou DarthMed, come clean, please. Who are you and why do you have expertise to make these broad statements? I’d love to comment back on what you wrote but will only do so when you present yourself as a real human being. Until I know who you really are, you will just appear as a vaguely disguised Sarah Palin.

http://twitter.com/LaniAR/status/6752311191

dear ER, oh.em.gee.you.are.sooo.slow. please be less slow. love, lani.
9:10 PM Dec 16th, 2009 from web

http://twitter.com/LaniAR/status/6752565073

@jburslem @K2daV @matthew_parente thanks. you guys are wonderful hopefully we can go home tonight in time for jimmy fallon
9:19 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6753414164

RT @BennRosales: if i keel over tonight @laniar gets everything signed me will by tweet. [I'm putting TEN Realtor logos on ur grave!]
9:49 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6753425383

okay, finally in triage, @bennrosales being questioned.
9:50 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6754309460

oh jesus, it’s blood test and ct scan time. we should take bets on diagnosis so we can pay this damn ER bill…. who’s in?
10:29 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6754752419

@jacksonj not sure yet. not neurological, that’s good. may be heart, ekg good, ct and blood up next
10:52 PM Dec 16th, 2009 from TweetDeck in reply to jacksonj

http://twitter.com/LaniAR/status/6754802646

nurse in here she’s super nice. looking like this might be an overnight stay.
10:55 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6754906274

OMFG @bennrosales just told the nurse “i’m a squirter” (it was in reference to blood and getting a drip but OMFG out of context it’s GOLD!)
10:59 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6755604065

benn wouldn’t let me tell the nurse dirty jokes. chest and arm pain not getting better, this effing ER is SO slow. ct scan next.
11:31 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6755844384

doctors don’t like when they’re being serious & you’re on your laptop googling them and poking fun of where they went to med school. lol.
11:43 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6756914602

OMFG JESUS EFFING CHRIST, it doesn’t take 30 EFFING MINUTES to respond to the emergency button in this ER room.
12:37 AM Dec 17th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6756918951

would they notice if benn coded? probably not, they didn’t notice for 30 minutes his monitor was off
12:38 AM Dec 17th, 2009 from TweetDeck

>>>http://twitter.com/mexicanfrommars/status/6757201416
@LaniAR that’s about the time i run out in to the nurse station and start screaming.
12:53 AM Dec 17th, 2009 from web in reply to LaniAR

http://twitter.com/LaniAR/status/6757448615

@mexicanfrommars did that. “they’ll be right there” yes i threw a fit. we’re not popular here.
1:07 AM Dec 17th, 2009 from TweetDeck in reply to mexicanfrommars

http://twitter.com/LaniAR/status/6757458525

okay, in the next 238023890 hours, @bennrosales will be admitted. feeling less humorous now, they don’t know what’s wrong. ct, blood clear.
1:08 AM Dec 17th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6757635367

scared.
1:19 AM Dec 17th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6757853747

this hospital is understaffed and we’re being shit on because of it. if my husband dies i’m going to go [eff]ing ballistic.
1:33 AM Dec 17th, 2009 from TweetDeck

>>>http://twitter.com/jasoncrouch/status/6757919371
@LaniAR Which hospital? Sincerely praying – I know that has to be truly scary.
1:37 AM Dec 17th, 2009 from TweetDeck in reply to LaniAR

http://twitter.com/LaniAR/status/6757940722

@jasoncrouch [says which hospital]. never come here.
1:38 AM Dec 17th, 2009 from TweetDeck in reply to jasoncrouch

http://twitter.com/LaniAR/status/6761011796

still in er triage still not in a private room. Hour [eff]ing 10.
5:04 AM Dec 17th, 2009 from txt

http://twitter.com/LaniAR/status/6762846325

Update on benn: after being in ER since 8pm, now finally into cardiologist, they said he’s been having a heart attack, angiogram now.
6:48 AM Dec 17th, 2009 from Tweed

http://twitter.com/LaniAR/status/6763197032

thanks for all of the well wishes, i’ll respond (and do so for benn) after the angiogram.
7:06 AM Dec 17th, 2009 from mobile web

http://twitter.com/LaniAR/status/6768701474

@bennrosales’ stint succeeded thank god. Now he has to lay flat for hours.
11:10 AM Dec 17th, 2009 from txt

http://twitter.com/LaniAR/status/6802566670

hey guys, thank you so much for your support- fingers crossed we can get @bennrosales out of the ICU today and into a room!
11:28 AM Dec 18th, 2009 from TweetDeck

>>>http://twitter.com/mexicanfrommars/status/6775473995

http://twitter.com/mexicanfrommars/status/6775473995

http://twitter.com/LaniAR/status/6803956231

@mexicanfrommars you were there at the same time? benn was the one having a heart attack over and over in the ER.
12:18 PM Dec 18th, 2009 from TweetDeck in reply to mexicanfrommars

http://twitter.com/LaniAR/status/6812930385

okay GOOD NEWS everyone, @bennrosales just got transferred OUT of ICU and into a private room! YAAAY!
6:02 PM Dec 18th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6832578969

today @bennrosales looks pretty good, still waiting to learn how much heart tissue was damaged. thanks for words of support, all
10:22 AM Dec 19th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6839028530

YAAY! Looks like I get to take @bennrosales home today!!!!!! Finally learned it was a clot that caused the heart attacks!
2:41 PM Dec 19th, 2009 from txt

Re Time’s article “Group Therapy” in the February 8, 2010 issue, arriving on newsstands now:

Time’s freelance reporter Bonnie Rochman contacted our Susannah Fox to discuss her remarks at the Institute of Medicine last October.

In hours of discussion about that post, while orienting Time to this new world, Susannah steered Rochman to many other people, who in turn spent additional hours. This is necessary to “get it right” on a complex subject like this, where it’s so easy to misconstrue. To the best of my knowledge the resulting article was accurate in every detail – an achievement.

Today’s magazine industry is today’s magazine industry, so a lot of valuable material ended up on the cutting room floor. Making the cut were PatientsLikeMe founder Jamie Heywood, ACOR founder Gilles Frydman, Dr. Danny Sands and me, along with Dr. Susan Love and many others. Significant contributors not named, though, include Susannah, “73 cents” artist/activist Regina Holliday and wise health IT analyst Vince Kuraitis. The Society for Participatory Medicine also received its first mention in mass media.

We’re grateful to Time for this important and accurate introduction of “patient 2.0″ to the general public. We hope to see broader coverage of equally important intertwined issues, especially the vital one raised in Susannah’s recent post: in the new world of patient participation, how can patients be assured they’re getting reliable information? As we’ve said here many times, who gets to say what’s reliable?

…The remaining 95% of “patients” out there are not motivated to become informed, or invest the time/energy/money in using any of these tools. These are the folks that know that fast food isn’t healthy, but are just too tired to choose differently. Some (emphasis on some) will do a standard google search when they receive a new diagnosis at best. Yet these are the folks – often folks with multiple chronic (often preventable) health problems, many overweight, on multiple medications, sometimes social problems – that have the real issue that needs fixing.

So we can all sit and perfect the tools for a few folks that never needed them anyway, or we can recognize that the kinds of solutions required for healthcare in the US today have nothing to do with fancy IT, or prioritization on search engines, and everything to do with low-tech, unsexy approaches toward grass-roots public health. Sorry to be the voice of reality guys.

Someone going by the name Darthmed posted that comment yesterday and it stopped me in my tracks.

It is my job (literally) to measure the impact of the internet on society and contribute data to the public conversation. I analyze survey data, write reports, answer reporter’s questions, and speak at conferences where people either know too much about what I study or know so little that I come off as some kind of oracle from the Interwebs.

In this case, I was definitely not writing about health IT, nor the latest Health 2.0 trendlet, but the basic, nearly-universal-among-internet-users habit of Googling for health information. Search is becoming a wallpaper technology, something we don’t even see anymore, yet it’s clearly an activity worth discussion.

However, Darthmed is telling the hard truth about health issues facing the U.S. It’s his voice I heard in my head as I listened to speakers at a recent National Institutes of Health workshop, “Preventing Stroke and Heart Disease: Connecting Traditional and Emerging Approaches to Change Behavior.” Speaker after speaker talked about how nothing really works in trying to get people to change their diets for the better, to get more exercise, to save their own lives and the lives of their children. It was a parade of one step forward, two steps back interventions: media campaigns, individual counseling, community outreach. None worked long-term.

As I sank lower and lower in my seat, the lizard brain voice started in: “What good is any of your data in the face of this crisis? People can’t sustain behavior change after being told directly that they are killing themselves. And now you’re going to get up there and talk about Flickr, YouTube, and blogs? What is the point?”

Luckily, the NIH workshop happened to fall on the same day as the FDA’s hearings on the internet and social media. My Twitterfeed was alive with coverage of the hearing, including some passionate opinions about how the internet can transform health care.

Another piece of luck is that for every Darth, there is an Obi-Wan Kenobi. For me, that’s Esther Dyson. She gives me the confidence to say nope, I don’t have a crystal ball, but I can help people understand the present in order “to get a sense for how the future will pan out.” I believe that, although very few people engage with their health on a daily or even weekly basis, it is important to understand what they do when their attention is focused on a health question.

I also believe that we don’t yet know enough about how to capture people’s attention, how to inspire them to say, “You know what? I’m going to skip that fast-food meal and make something healthy for dinner.” Maybe it could be something on Flickr, YouTube, or a blog. Maybe it’s something they find in a search result. Maybe it’s being connected, being part of a network of people who are influencing each other without being conscious of it.

So, welcome Darthmed — please keep posting your killer observations. But don’t mind me if I keep tracking how the landscape is shifting under our feet.

Health information is obviously an important category of information users are looking for. For this health search feature we decided to offer users one source each from a governmental health agency, a medical institution, and a commercial site. We’ll study how users like these choices and continue to iterate. None of these sites is paying any money to Google to be included in the feature. Google is 100% committed to ranking websites objectively to provide the most relevant information to users. Websites cannot pay for higher search rank.

——–

Eric Schmidt wants to solve health care’s “platform database problem” and one critic has  countered that “computers cannot practice medicine.” One of Google’s initiatives is to guide consumers to safe, trusted health websites. Is that such a bad thing?

Search result placement can make or break a site or a business model, which is where dot-com blogs come in, but they also have the potential to make or break a consumer’s access to health information, which is where e-patients.net comes in.

First, some background. Search is central to health information gathering: Two-thirds of consumer health inquiries start at a general search engine. The trend line for consumers’ reliance on health search is so steady, in fact, that Pew Internet stopped updating it in 2006. Other researchers seem to take search dominance as an article of faith, too: Harris Interactive, Manhattan Research, Center for Studying Health System Change, National Cancer Institute’s HINTS – none have recent data on health search, at least on their public sites.

What has changed are the search results.

Google Health’s OneBox launched in August.  Instead of just featuring sites kicked out by the “democratic” PageRank algorithm, search results for “high blood pressure,” for example,  highlight information from A.D.A.M., Mayo Clinic, WebMD, or Medline Plus at the top of the results (well, almost the top: 3 paid advertisements or “sponsored” links appear first). Everything else is pushed down and out of the golden spotlight of the top results where consumers are likely to click. To paraphrase George Orwell, Google seems to have decided that all health sites are equal, but some are more equal than others.

Consumers do have other choices. According to Hitwise, Google garners 72.3% of U.S. searches; Yahoo 14.8%; and Bing 8.9%. A search on “high blood pressure” on Yahoo Health returns a combination of sponsored links and multiple articles from a single source: Healthwise. No algorithmically-generated results appear in the center well of Yahoo Health’s page.  Bing Health, which launched on Jan. 12, tops their search results with sponsored links, a box of Mayo Clinic links, and then a full set of algorithmically-generated links. Health search “verticals” are available, such as HONsearch and ResoundingHealth, but these are also stocked fishing ponds featuring chosen sites and content providers, not the open waters of the internet.

So what? Mayo/WebMD/Medline dominate the health information marketplace anyway, as measured by companies like comScore or HitWise. Consumers need trusted sources to help them navigate a new diagnosis. What’s the big deal?

I think it’s useful for consumers (as well as health info purveyors of all stripes) to note the changes and to talk about how powerful search results can be.

Here is one site’s story:

In 2001, NCHealthInfo.org launched as a model for the NIH’s Go Local initiative (there are now 35 such sites). North Carolina residents can find links to nearby health services as well as information related to local health topics (Southern Tick-Associated Illness) and general issues (nutrition).  I recently interviewed the site’s director, Christie Silbajoris, about how they garnered traffic for such a low-budget site.

Their strategy, in sum: Be first, be useful, then get out of users’ way.

The site is a honeypot of links in and out, which boosted their PageRank. The NC Health Info team was not sure what their audience would choose to research so they just kept uploading what they believed to be the best resources, attached robust metadata (keywords related to the page content), and Google blessed them with excellent placement. If you search for “health services glossary” for example, they are still among the top results. They also are a top result for searches on military health insurance and for diabetes info in Spanish, much to the surprise of the librarians who run the site. Now, however, they are losing ground and getting pushed down in the search results.

Is NC Health Info an artifact of history? Would a small site have a chance these days? If not, is that OK? Does the best information reside on the big player’s websites? Or is this another example of the Googlization of Everything?

More broadly, I wonder if curated search results are the answer to the ongoing debate over information quality. Pew Internet research shows that consumers are not likely to check the source and date of health information found online. I have often advised people who are concerned about that finding to “go where the users are” (ie, search sites).  As I said at the top: Search sites are now guiding consumers to safe, trusted health websites.

What do you think? Is this is helpful to consumers or not?

She recognizes talent when she sees it – and here, she plays the role of patient as ingenue, imploring the care team to take the leash off her potential.
__________

An appeal for Participatory Medicine,
inspired by Diva e-Patient friends and colleagues:

Dear Wonderful Doctor and Care Team,

I am writing to suggest that you cast me in the most important performance of my life: My Health Care Crisis.

I realize you hardly know me and that you can’t really stop to get to know me at this point because there is a long line of folks just like me waiting for your services… But since we’re suddenly on a kind of “Fast Track” to get to know my body (given last week’s diagnosis), I was hoping that you’d at least consider giving me a supporting role in my upcoming treatment.

I’ll play it straight; no Femme Fatal, Gypsy Rose Lee, or Little Lost Soul. Nope, I’ll go for a completely modern (dare I say, “sexy”) evolving archetype, The Empowered Patient.

I am sure you have questions. And yes, I am a rookie. I cannot predict with the exactness of a doctor like you the outcome of my involvement in my care. But acknowledging that I have a role would be a powerful component in the show. And this is a kind of show, Doctor, isn’t it?

What do you say? Can you accept a wee bit of showmanship from the patient side while you miraculously cut that large tumor out of my endometrial liner and administer powerful technology reserved for only the most specially trained among us? This *is* high drama but I promise I won’t be too saccharine or too melancholy. I’ll take the pain meds as directed and open up to the fear as best as I can.

Doctor, if I haven’t made it precisely, exactly, clear to you yet, I think we make a great team. You’ve gotta let me show you what I’ve got.

Sincerely,
Your Patient

Originally posted on her blog, 1/8/2010.

Asked my opinion about how healthcare will evolve over the next, say, five years, I mostly answer that I pronounce the year 2.010 as “two-point-o-ten”.

In my honest opinion healthcare will start to migrate towards a more patient-centered model, and I think in a 2.0 way. I have tried to catch my thoughts in a little video below. It is the rough sketch of a posting I’m working on that is the follow up on my 15,000th tweet post.

The demographics are changing, as I also mentioned in my October video of healthcare in the Netherlands: [You can skip this if you remember it, but it's worth a review -Dave]

The way patients act will change with the demographics. They will expect healthcare to be 24/7, they expect it to be on- & offline just like the internet: anytime, anywhere and most of all full of choices & options, from which patients and their caregivers will choose.

I think there will be evidence about the way youth is concentrating, I can see it in our own kids, they get more and more impulses, in a short period of time, make faster choices out of more options at a glance, and what’s most important: they will choose

Up until now (at least in the Netherlands) healthcare hasn’t really become a market. Sure there is some freedom of choice, but all institutions offer more or less the same. And in the rare occasion where a HC institution has something really special, they almost never talk about it other than in conferences, scientific literature, so … that’s still different from the way the “new” population of patients works its way though the bulk of information.

One way or another, once providers start talking about their different offerings, the freedom of choice will let this new generation “vote with their feet.” Remarkable to add is the difference in gender within social networks, although there are some myths about how the generation which will follow will use media as some research shows.

This development will lead HC into a different model I think, as shown in the graph above. Of course, whether the year 2.014 will be the correct one, and if it will be a Evolution rather than a Revolution is to be seen. The way HC will be REshaped from patients’ perspective will be a good “side effect.”

Well, now it’s going viral, at least among the healthcare crowd on Twitter. Fasten your seatbelts.

The closing frame says it’s made by Mary & Peter Alton. It appears to be Twitter user @PeterAlton. Follow him, and thank him.

p.s. Never have I seen a better example of how an entertaining video can transform the reach of a good message.

Jen McCabe and Regina Holliday

Elizabeth Cohen, CNN Senior Medical Correspondent, captured the zeitgeist of the health data rights movement in today’s must-read article, Patients demand: ‘Give us our damned data’. An e-patients all-star team is quoted in the story: Jen McCabe, Regina Holliday, e-Patient Dave, Alan Viars.

The Invisible Stakeholder:
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 2004.¹ 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.”²

These are signs of a system that’s governed without input from its customer – the patient.³ 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.

Patient is not a third-person word.

Believe me, this is personal. This application of Government 2.0 isn’t like fixing roads or town meetings. In this one, lives are at stake.

Yet people talk about it abstractly. After my own near-fatal cancer in 2007, as I began speaking at public events, panelists constantly spoke as if “patients” were somebody who’s not in the room. When I first spoke I found myself saying “Look, patient is not a third person word! Whether it’s you yourself, your mother, your child, or someone else, the time will come when you’ll be the one at that hospital bed, wondering desperately, ‘What are we going to do??’”

But patients are nowhere to be seen at decisive meetings about the future of healthcare. Why?

Patients have to pay to be heard.

And they usually can’t afford to.

I know it first-hand. Time after time I’ve been invited to speak for patients on Meaningful Use in Washington, or at conferences, and every time they said they’d pay for my travel but not for my time.

Of course, policy orbits around those who were at the meetings. How’s that working out right now? ACOR president Gilles Frydman tweeted that in the 576 page proposed CMS rule for meaningful use released last week,

• “EHR” (the hospital’s system) appears 1,552 times; PHR (the patient’s) appears 5 times
• “Eligible Professional” appears 1,540 times; “patient-centered” appears twice.⁴

It’s doubly ironic because the most motivated patients, the ones with the most at stake (and most educated), are most likely to have financial stress – thus least likely to be able to “take a few days off” to go help in DC.

So ask yourself: when your time comes, do you want a more industry-centered reality, or a more patient-centered one?

This is a crisis. Let patients in.

Government 2.0 needs a social-media-savvy Patient-in-Chief.

For years we’ve wondered how to achieve the benefits of IT in healthcare. Now we’re offering billions in incentives to physicians, and we’re still not sure if they’ll adopt.

But patients are already doing it⁵ – this is a stakeholder that won’t need incentives. We just need to hook the government up, to harvest those existing conversations and listen to what they want.

I’ll close with another quote:

“Karen represents a new type of patient we’re now beginning to see. She has a sharp intelligence and a great intrinsic curiosity. She knows how to use the internet. And she appreciates both the patients’ and the clinicians’ points of view.”

Patient-helpers like Karen don’t compete with what doctors do at all, Perez-Soler says. “On the contrary, they can be wonderful allies for doctors. She finds the best, high quality online materials for lung cancer, classifies them by topic, and makes them easy for other lung cancer patients to find. It’s a wonderful complement to what we do at our clinic.”

Clinicians must keep up to date on a wide variety of medical conditions while seeing dozens of patients a day. Patient-helpers like Karen will typically know only about their one disease, but since they can devote a great deal of time to it, their knowledge within that single narrow niche can be impressive.

Quite current, yes?  No: this was Tom Ferguson, MD, founder of e-patients.net, writing in the British Medical Journal. Ferguson died in 2006 – and this article was published in November 2000.⁶

Nine years later, patients are still the invisible stakeholder, costs have risen another 97%,⁷ and quality is no better. Today more than ever, America needs a patient-in-chief. This talk will say why.
_____________
^{1 Testimony of Charles Safran, M.D., President, American Medical Informatics Association, before the Subcommittee on Health of the House Committee on Ways and Means, June 17, 2004. [back]
2 John Santa, MD MPH, in Consumer Reports, November 2009. [back]
3 I was interviewed in 2009 for an industry study of pending healthcare reforms. The last question was “Which stakeholder has the most to gain or lose from these reforms?” Choices included government, insurers, employers, manufacturers, and providers – not a word about patients. [back]
4 Gilles Frydman (president of ACOR) analysis of CMS document, Twitter, 12/30/09. [back]
5 “The Social Life of Health Information,” Pew Internet and American Life Project, June 2009. [back]
6 “Online patient-helpers and physicians working together: a new partnership for high quality healthcare.” British Medical Journal, November 2000. [back]
7 “Health Care Costs and the 2008 Elections,” page 2. Kaiser Family Foundation, October 2008. [back]}

This past year my father required open heart surgery. This is a short article about the hurdles we (his family) encountered along the way. I’ve changed the names, because it is not my intention to embarrass particular hospitals or physicians. The issues I raise are systemic within the American healthcare apparatus. My objective is for you to get smart, get mad, and gain control of YOUR medical records.

In July 2009, my father, Charles, had a routine follow up with his primary care physician, “Dr. Smith.” Dr. Smith told my father, “Well Charles, your EKG came back the same as last year: abnormal.” “Abnormal? What?! Last year was abnormal, too? This is news to me!” My father was stunned.

“Well, you knew you had a heart attack, didn’t you?” asked Dr. Smith. “I don’t know anything unless you tell me!”, my father told Dr. Smith. The doctor changed the subject to treatment: “Let’s get you in to see a cardiologist.”

Yes, that’s right, my father unknowingly had had a heart attack even though he was regularly receiving medical care. A year prior his physician either didn’t bother to look at the result of his EKG or failed to inform my father of his condition. Unbelievable, I know, but true.

A month later, my father visited a Charleston, WV hospital to assess the blockages and see if they could be repaired without bypass surgery. It turned out that the blockages were much worse than anticipated and it became certain that my father would require open heart surgery. With a 75% blockage in one artery and a 95% blockage in another, the cardiologists were amazed my father was even walking around and not experiencing chest pain.

My sister, Lindsey, a headstrong nurse anesthetist based in Richmond, VA, came home to oversee my father’s medical care in Charleston. Lindsey watched over my father like a hawk and prevented more than one medical error. For brevity’s sake, I’ll spare all the details, but her impression was that the cardiology department in Charleston was in disarray and no one was sure who was going to perform the open heart surgery.

As a “Health 2.0 guy,” I turned to the Internet for answers and to determine the competence of the Charleston based hospital. I found free reports on healthgrades.com and determined that the heart surgery-related mortality rates to be relatively high at this particular hospital. Of course, the higher mortality rates might be attributable in part to the general health of the surrounding population, but it was several times higher than some of the top-rated hospitals on the site.

Because my sister works in and is familiar with the healthcare system in Richmond, VA, she and I convinced my father that he should instead have his surgery there. Lindsey felt she could have more control over the situation if he were transferred. Also, according to healthgrades.com, Chippenham in Richmond, VA was among the Top 50 hospitals in the country and this is where my farther eventually had his surgery. (I’m providing its name since we had totally positive experience there.)

With the decision to move to Richmond began round two in my father’s battle to gain control of his medical information. The Charleston hospital did not want to release his information and the nurses and the physicians tried everything in their power to prevent the transfer and, apparently, “keep their customer.”

The Hard and Fast Sell:

After the cardiology department was alerted we were transferring, a new cardiovasular surgeon came to visit my father at 10 PM and said, “Hello Mr. Viars. I’m Dr. Jones and I’ll be performing your bypass tomorrow morning at 8 AM.” No family was around at the time and my father flatly refused and told the surgeon that arrangements had been made for his transfer the next day.

Holding Medical Records Hostage:

Before the transfer to Richmond, my sister requested a copy of my father’s medical records from the cardiologist. “We don’t normally do that”, the cardiologist replied. Later that morning, she went to the hospital’s records department and asked for the records. “We can’t give them to you. We can only give them to the patient. We’ll transfer them to the other hospital for you,” said the woman behind the desk. Lindsey replied in a raised voice, “Here is my photo ID and a document confirming I have medical power of attorney. My father is upstairs if you want to confirm.”

Trying a new tactic, the women behind the desk then told my sister that, “His records are not complete and we aren’t allowed to give out incomplete records. We will have to wait until later today when we can speak to the cardiology department and make sure its okay to release the records.” My sister was insistent, “Look lady, my father is leaving today, and you are going to give me those records right now. I don’t care if they are complete or not. I’m standing right here until you give me my father’s records.” The woman left to speak with other staff members and my sister said it looked like they were “holding court” trying to determine if they should release the records. In the end, they relented. We got the records, my father made it to the other hospital, and had the surgery. I’m happy to report he has recovered remarkably well. We have a happy ending, but my guess is that others haven’t been so lucky. Here are the takeaways:

Lessons for the Wise:

• When you have medical tests, YOU THE PATIENT, need to ask for the results. Get a copy. Make sure your physician has actually reviews your tests. Just because you didn’t hear anything, don’t assume everything is okay.
• If it’s possible, when you go to the hospital have someone by your side who cares about you and can advocate for you. If you’re lucky enough to have a nurse, physician, or other medically educated person to be your advocate, even better.
• Sadly, you may have to get angry in order to gain access to your medical records. Don’t let them tell you no. It’s YOUR data – all of it – and it’s your right to have a copy. Keep your own records.

It also belongs here because this short little piece contains a terrific and empowering “mind pop” at the end. Enjoy. - e-Patient Dave

My father had two things on his Bucket List — he wanted to own a Cadillac and to go to Hawaii. In his early 70s he proudly bought a Cadillac. I asked him when he was going to Hawaii and he said, “Later.” He died at 73 never having seen the sun rise over the beaches of the islands only a five-hour plane ride from his home. I’ve often thought that he was afraid to go to Hawaii. Afraid that if he emptied his list he wouldn’t have anything to look forward to or even worse, he wouldn’t have anything to live for.

In 1996, when I was given a few months to live, I didn’t have to think about my Bucket List. At the time I was nursing my nine-month old baby. I knew I wanted to live to see him start school, learn to ride a bike, be in a play with him, see him graduate, sit in the front row at his wedding, and meet my grand kids. That list gave me lots of things to look forward to. It was one of the things that kept me alive.

In 2009 I lived long enough to witness “my baby” graduate from the 8th grade. As he walked across the stage to receive his diploma I mentally crossed one more thing off my Bucket List — one less thing to accomplish before I died. I felt proud, grateful, … and old.

As a soon-to-be-empty-nester, I’ve been thinking a lot about what my life will be like without kids around every day. Undoubtedly it will change, but I don’t want to just cross off the things I’ve been looking forward to for years and slowly run out of things to live for.

I’ve decided that this New Years I’m officially trashing my Bucket List. And in its place I’m creating a Bucket Queue. I’m going to stop trying to get it all done before I die and I’m going to start adding something new to the queue every time I’ve completed something.

Out with the old. In with the new. And keep ‘em coming!

Author’s note: Check out http://www.43things.com to create and update your own personal Bucket Queue.

A few weeks ago I was in town for a talk at the northern California chapter of HIMSS on personal health records. Matthew Holt of Health 2.0 and The Health Care Blog told me QS was meeting that Monday, at the headquarters of Wired magazine.

I registered, and at the end it asked “You wanna present?”  I never say no to that, though I didn’t know what I’d talk about.

Turns out host Gary Isaac Wolf was really interested in the little spreadsheet where I’d tracked my tumor sizes as my treatment progressed. :–) So in the context of “quantified self,” my topic became “the quantified patient.”

This is an informal production – audio from a camcorder (no mic) blended with my slides and a few other images. It was fun: a responsive, engaged audience. Thanks to the QS gang for the opportunity.

Related notes -

• QS is a project of Wired’s Gary Isaac Wolf (Associate Editor) and Kevin Kelly (Founding Executive Editor). “KK,” as he’s known, is also on the advisory board of our Journal of Participatory Medicine.
• KK’s videos on Vimeo include several others from that night. (Arg: the room was so full the camera had to shoot the speakers from the side – no slides!)
• Among the other presenters that night:
  • Spectacular e-patient and #getupandmove entrepreneur Jen McCabe
  • Spectacular human and entrepreneur Esther Dyson, also on JoPM’s advisory board.

The Pew Research Center’s Hispanic Project and Internet Project just released an in-depth look at internet penetration across racial and ethnic categories in the U.S.: Latinos Online, 2006-2008

From 2006 to 2008, internet use among Latino adults rose by 10 percentage points, from 54% to 64%.  In comparison, the rates for whites rose four percentage points, and the rates for blacks rose only two percentage points during that time period.  Though Latinos continue to lag behind whites, the gap in internet use has shrunk considerably.

Most of the growth is coming from foreign-born Latinos and those living in lower-income households. Native-born and higher-income Latinos, like non-Hispanic whites, may have already reached internet saturation in 2006.

Another group that has not moved the needle since 2006: people living with chronic conditions.

My next report will focus on internet use among adults living with chronic diseases (with a special focus on diabetes, heart conditions, lung conditions, high blood pressure, and/or cancer).  The last time I took a look at this group was in 2007, when we asked a broader question to define e-patients living with a disability or chronic disease. No matter which way we slice the population, though, I can tell you that internet access is still low among people challenged by health problems. Not much has changed in two years.

The good news, however, is that once online, people living with chronic conditions get right in there — communicating with friends and family via email, looking online for health information, and upgrading to broadband at home.

So: if you believe that participatory medicine starts with participation by the patient, pay attention to internet access numbers (especially broadband and wireless figures). Participation matters, but without access, it’s a moot point.

Joe and Terry exemplify the participatory medicine movement. He’s a pharmacologist, and she’s a PhD medical anthropologist, studying what people do in a given culture (in this case, ours). Our founder “Doc Tom” Ferguson lists them as his advisors in his White Paper’s acknowledgements.

Theirs is a story of conversion based on undeniable evidence gained by listening to patients:

“We were the country’s leading generic enthusiasts,” he told me recently. But over the last eight or nine years, Mr. Graedon began hearing about “misadventures” from people who read his syndicated newspaper column, also called The People’s Pharmacy.

The stories were typically from patients who were switched from a brand name drug to a generic one and had side effects or found that their symptoms returned…

The Times article spells out the issue: to the FDA, a generic is the same if it has “the same active ingredient, strength and dosage form.” But the citizens on the People’s Pharmacy discussion forums report that’s not true for them – and new research the Graedons sponsored shows that another variable, the release rate, varies. The body might well respond differently if the drug arrives in the cells at a different rate, but the FDA doesn’t look at that. People’s Pharmacy convinced ConsumerLab.com to do that research.

E-patients who want to take responsibility for their own care need to wise up and speak up. In many ways the FDA’s processes prevent junk from entering stores, but it’s a mistake to expect perfection.

Listen to your body. If your insurance company switches you to a generic, pay attention to your response. Or even if it doesn’t! If your response to a medication changes, tell your medical advisors.

Yesterday the Institute for Healthcare Improvement’s “WIHI” series hosted a terrific webcast on the Open Notes project that’s being funded by the Robert Wood Johnson Foundation. (I need to dig up the link to the event’s archive, but I’m in a hurry.)

Speakers were Dr. Tom Delbanco of Beth Israel Deaconess Medical Center (a pioneer of patient access), Dr. Mary Merkel of Dartmouth-Hitchcock, and Bob Desaulniers, a patient of Dr. Merkel’s who lives in my own town, Nashua NH. Gotta go meet them!

Inevitably we revisited the hoary concerns about the horrible things that will happen if we see our health data. Dr. Delbanco cited a paper from the 1970s that advocated giving patients their medical records. And this morning Ted Eytan dug it out.

In this era of evidence-based medicine, isn’t it time for policy makers to look at this evidence?

Ted’s post:
________________________________________
McLaren P. The right to know. [Internet]. BMJ 1991;303(6808):937-938.

I’m not that smart and my ideas are not that unique.

This is why I enjoy writing the posts that are tagged “where we came from” on this blog.

The title of this one comes from a 1991 article published in the British Medical Journal about the idea of providing patients access to their complete medical record. To really dig deep, though, I wanted to grab the seminal 1973 article from The New England Journal of Medicine on this topic, and thanks to the Internet, I found it.

In Sounding board. Giving the patient his medical record: a proposal to improve the system (There appears to be a PDF of this article on the Internet here), authors Shenkin and Warner lay out some facts about the health system that don’t seem to different than those of today, sadly:

Dissatisfaction with the functioning of the medical care-system has become widespread. Four serious problems are maintaining high quality of care, establishing mutually satisfactory physician-patient relations, ensuring continuity and avoiding excessive bureaucracy.

Some differences were apparent in 1973, such as the fact that in 41 states, patients could only obtain their medical records through litigation (!). Also, it appears with the emergence of “centralized organization” though things like health maintenance organizations, that physician autonomy was under siege. The health system was considered at the time to be “decentralized to the penultimate step – the physician” and the fear was that their autonomy was “unchecked.”

All of that aside, the authors, quite visionary in my opinion, laid out an almost Web 2.0 version of the medical world.

They talked about the idea of “decentralized medical review.” A few quotes:

The freely available record would provide a more “longitudinal” view of a patient, and physicians would appreciate better (and treat better) the course of a disease. Since innovation proceeds mainly by the contagion effect, new knowledge would probably be put into practice more swiftly.

And this one

Decentralized peer review would provide recognition of excellence in the practice of medicine, and hence enhance the prestige of being a practicing physician. Patient records and the care that they reflected would become a source of pride open to the perusal of fellow professionals. The expected improvement in continuity would decrease frustrations, and improved physician-patient relations would add importantly to physician satisfaction.

Whoa. They are talking wisdom of crowds, viral innovation, and building trust through transparency. In 1973.

Flash forward to 1991. In The Right to Know, author McLaren discusses data from Denmark, which provided patients “statutory rights” to their entire hospital record, with no ill effects. He concludes:

The argument against giving patients greater access to their records has been lost; the challenge now is to get doctors skilled in writing records that their patients will find useful.

Whoa. He’s talking Meaningful Use.

1973 was before my medical time, but 1991 wasn’t. In 1991 I was in medical school, and I’m pretty sure if you asked me, “Ted, should your patients see what you wrote about them in that manila folder thing with paper?” I would have said, “Why shouldn’t they?”

Ironically, it’s probably the very group that opposed these viewpoints that are responsible for creating mine. Summer of 1991 was my first (and I think just one of 2) trips to the national meeting of the American Medical Association, in Chicago. That meeting was marked by protests from the HIV/AIDS community on the outside. And on the inside, after a week, I remember leaving with the thoughts, “I met a lot of great peers here, but who are these leaders who are resistant to technology and only allow heterosexual men to participate?* They aren’t me. And I’m not them.” This is the heritage of Generation X – we were groomed to be on the side of the patients.

So that’s my story, and the story of where we came from with regard to sharing medical records with patients. Has nothing happened in 18 years? Absolutely not.

• The largest medical groups in the United States regularly share medical records with patients, online
• Most patients have a “statutory right” to their hospital record, albeit, not in the most friendly or useful way (see this example from Tufts University)
• Crowdsourcing, trustbuilding, and transparency are sweeping the business world. Health care is on the verge.
• Generation X are the attending physicians and medical directors, Generation Y are graduating from their residencies.

In the Shenkin article, it was proposed that a law be passed to require that a “complete and unexpurgated copy of all medical records, both inpatient and outpatient, be issued routinely and automatically to patients as soon as the services provided are received.” They do a great job of covering every known objection, “firstly” through “ninthly.”

My favorite is of the fear of “poor quality review” by peers and patients. They said that in 1973, it is “safer for them (physicians) to measure adequacy by academic degrees achieved than by competence demonstrated.”

The great thing I have learned pretty solidly from so many people by 2009 is that the medical community has so much support from patients and families – they want them to be great, they will only help. One patient said this at a recent continuing education course to room of us: “Can I just say thank you for paying attention in medical school, you are in my thoughts, you have my full gratitude.”

Let’s please remember these words to keep the conversation about ending secrecy an easy one, not a hard one. And, carry these two articles in our back pockets at all times.

*The American Medical Association has since reversed its stance on discriminating against gay, lesbian, bisexual and transgender physicians and patients.

Me being me, I just had my annual physical. Great visit and all that.

Yesterday I got a letter about my lab results. My cholesterol and weight are trending unfavorably, so the good doctor said “you need to take lifestyle changes more seriously to reduce your risk of developing heart disease.” (I hear doctors hate it when they save you from cancer and then you go die of slovenliness.) More advice followed, good personalized stuff.

But then the robot part of the letter kicked in:

If you can use the Web and want more information
about cholesterol levels and what they mean,
see http://medlineplus.gov/cholesterol.

If? Web? What Web?

An incredible moment (and I don’t say that often) happened after three physicians presented how their organizations are giving patients access to their medical records online. Their presentations were all encouraging. But during Q&A we got down to the nitty details, and comments from two physicians revealed a well-meaning attitude that I can only describe as protective and paternal:

• Concern about emotional impact of bad news
• Concern about the difficulty of interpreting some reports: “Even I can’t understand radiology reports sometimes.”

Regina Holliday was there – the “73 Cents” artist whose husband died of kidney cancer in June. Ted Eytan MD, an avid advocate of patient empowerment, asked her thoughts. With a cold clear look in her eye she said:

When I finally got my hands on his medical records – a month after I asked for them – I saw that on 3/25, 3/26, 3/27 and 3/28 they mentioned an 8cm tumor in one kidney and 10cm in the other, a large growth in the abdomen, bone mets in the pelvis, sacrum, femur, and skull, and soft tissue mets throughout the lung; at the end the reports say they couldn’t get a good image “due to patient’s extremely distended bladder.”  The nurse’s notes of 4-7 also mention concern over urine retention.

After another CT on 4-10, then the radiologist comes to me to tell me verbally that the patient’s bladder is on the point of rupture.

My husband almost died from a ruptured and infected bladder, while in the care of hospital staff, because nobody read the record.  I could have read it and known he needed a catheter.

What came next was telling: a physician, meaning well I’m sure, said “Well, we can sit here – we’re all college educated …” and Regina said “I’m not.”

What lessons can we take away?  I’ll start:

• You don’t have to be an MD to contribute value from seeing the record.
  • Consider the Minnesota kidney cancer tragedy two years ago. (A cancer patient awoke to find that the wrong kidney had been removed. It traced back to an error in the first dictated report.) If the family had seen the doctor’s notes they could have spotted the wrong-side error.
• As internet visionary Clay Shirky has said, “Giving patients access to their medical records will just naturally improve the quality of what’s in there. It’s like the way you clean up when you know company’s coming.”

Regina summed it up in an email today: “Have they met the folks on ACOR? Might open their eyes.”

Perhaps protective paternalism should be inverted: DO show us our data, to help us save our own butts from medical error.

Now that I think of it, who wouldn’t want to let us help save our own family members?

What a fitting fulfillment of the meeting’s title – “How Access to Information Can Empower Patients and their Caregivers.” Thanks to CPeH and the National Partnership for an important meeting.

It could be a joke and it could be funny! Instead, it is just the sad truth. And embedded in this sad, sorry truth, lies a complete lack of democratic ideals and a deliberate attempt by various parties to keep as much control of your health data as possible. The main communication tool in doctors’ offices at the end of 2009 remains the fax machine, a dinosaur-like, throw-away appliance that is no longer part of the communication tools used by modern communicators and regular users of the Internet. This is in contrast with what is taking place in the highly competitive and innovative world of social media and open streams, and you must conclude that there is a concerted effort by segments of the health care professionals to remain technologically backward.

Close to $2.5 trillions have been spent on health care since President Obama announced his decision to reform the health care system. A year later, as expected,  all the talk in Washington remains about:

• the end/restart/end-again of the public option
• the expected final/interim/temporary definition of “meaningful use”
• the amount of savings/taxes/additional expenses
• move from FFS (I really mean Fee-For-Service) to PFP and
• comparative effectiveness/death panels/healthcare rationing

Have you heard ANY politician talk about patient/individuals empowerment in relation to health care reform? I have not! Health care reform is still 100% about reimbursement reform and 0% about social innovation. No surprise when individuals so often experience dehumanizing events when they interact with the medical system.

Patient empowerment cannot happen in this world without access to the data points that are necessary to make informed decisions. The new healthcare system must offer us, the end users and the people who indirectly pay for all of it, the ability to access directly and without any limitations all of our health data and the ability to create apps to use what is ours, in any form we deem acceptable. Last spring we crafted the Declaration of Health Data Rights for a good reason. We demanded ownership, access to a computable version and the ability to share our own data, including test results, prescriptions and tests, for a very good reason. Not much, if anything at all, has changed since then despite wide media coverage of the demand. My doctor still communicates with others through his fax machine. I am an original member of a large spiral CT scan clinical trial done at Cornell medical center and I still cannot get a copy of the scans, a digitally native application! Tell me why!

At the same time, just 3 days ago, in the company of 2,500 developers, you could experience “live” the competitive level in the world of social media. At the “Le Web 09″ conference in Paris speakers representing Twitter, Facebook, MySpace, Ning, LinkedIn & SixApart all announced that starting in early 2010 anybody can have full access to their Open Streams. That means that anyone can have access in real time to all the conversations taking place through all these communication platforms. Twitter also announced that over 50,000 apps, each connecting to its platform, form its ecosystem. The disconnect between the 2 worlds couldn’t be stronger and shows why the current efforts at health care reform will fail if we the end users and innovators cannot full access to the data. That’s right: access to my data is the key to health care reform.

Adam Bosworth posted the following three days ago. It perfectly reaffirms the absurdity of this disconnect:

Much of personalized wellness advice depends on basic lab results like the lipid panel. The person with a total cholesterol of 150 may need different advice than the person with a total cholesterol of 250, for example. Today, if I go into a lab to get my blood drawn, say for my checkup, I cannot download the data into my personalized wellness tool of choice unless my doctor electronically approves it.  Not because the lab cannot support this—90% of labs performed outside hospitals are covered by Quest Diagnostics or LabCorp and both support electronic data transfer.  Rather, a doctor’s electronic approval is required to release the lab data to the patient, even when the patient wants this data. Well, most of the doctors aren’t using electronic systems and most of the ones who are don’t have the ability to approve these transfers, while some of the ones who do have the ability choose not to.

Even weirder, if you try to get your client ID with Quest, you’ll soon  realize that YOU are not the Quest client. Your doctor is. Your doctor owns your health data! Will he/she still have a fax machine when you request the ability to connect, analyse and share all the data you personally collect as part of the Quantified Self movement, in addition to some of the genetic data that has been given to you by 23AndMe and the data that will certainly come from the Open Stream of companies like PatientsLikeMe or others that will use the growing power of Social Structured Data tools like what you can access at Factual. Obviously, in the highly social information age, knowledge building is constantly more about  connections:

• between us and others,

• between us and our data and,

• between data from us and from others.

That is why I strongly support Adam when he says:

I call on DC and the State Legislatures to change these laws [...]  Pass laws that specifically give the lab companies the obligation to deliver our data electronically directly to us – the people, if we want it. If you desire true health care reform that actually will lower costs and curb illness, unleash the power of the innovators to help consumers with personal wellness as mint.com does with financial wellness. Release our health data.