May Old Acquaintance Be Recalled
Since it is the season for “Auld Lang Syne” and reconnecting with old acquaintances is an internet pastime, I wanted to link to a wonderful article by Wayne Cooke, a stage IV colon cancer survivor and true e-patient.
I haven’t seen him in many years, but because of online storytelling, I am up to date on the Cooke family’s travels & travails and newly aware of how flagging down a plane in Paris can prepare one for facing down colon cancer.
Talk of the Nation
I had the pleasure of being a guest on NPR’s Talk of the Nation yesterday, along with Dr. Scott Haig and Dr. Ted Eytan, to talk about “Do-It-Yourself Diagnosis on the Web.” (For a substantive summary of the show, check out Josh Seidman’s recap.)
The producers were smart to kick things off with Dr. Haig’s lovely definition of “brainsuckers” (basically, pushy patients) and his wish that all patients were like nurses (trained to take orders from doctors). The phone lines lit up and stayed busy for the next 30 minutes.
At first I was surprised by Dr. Haig’s unapologetic attitude. But upon further reflection, I realized that as an orthopedic surgeon he just may not have had opportunities for developing a more enlightened view. As a researcher, I’ve had the benefit of learning from my respondents and talking with doctors who have developed a viewpoint beyond their own interests.
My personal turning point came while I was writing “Internet Health Resources” and reading survey responses like this one: “Our first visit to the neurologist, when my son was diagnosed with autism was not as devastating as it could have been. My husband and I were well informed and had already figured out the diagnosis by the time we saw the doctor. By being better informed, that first visit was very informative and constructive because we knew the background information, weren’t in denial and could discuss therapies and tests in a logical way with the doctor.”
First, who could argue with that mom’s online pursuit of information? Second, when 80% of internet users are doing something, you are probably not going to get the genie back in the bottle.
I would love to hear about other people’s turning points.
Markle Foundation Policy Meeting 2007
The Markle Foundation has a health program that is dedicated to accelerating the rate at which information technology enables consumers and the health system that supports them to improve health and healthcare. That’s a mouthful. Well, anyway, they held a meeting in San Diego over the weekend that brought together a lot of the major healthcare players, including some “Health 2.0″ companies, like Jamie Heywood from PatientsLikeMe.com.
David Kibbe has the story on the meeting:
The Markle conference was a conversation, a very spirited debate at times, on the answers to these questions in reference to this framework :
1) What is required to “liberate” personal health information and data in electronic format from the institutional custodians, the Health Data Sources in the framework above, that currently create, store, and manage health data, but do NOT currently release or share the data widely? What actions or incentives are required to enable Americans to get their hands on their own health data?
2) What rules should govern the organizations that acquire, store, and share personal health information over the Internet? Are there trade-offs between privacy protection and access? Is “privacy” used sometimes as an excuse for the institutions to cling to control over the data? How do we avoid bad policy and bad legislation in this important area?
Finally, a distinctive characteristic of this meeting was the consensus on certain relevant, important observations and goals. Everyone in the room agreed that patients are not very interested in PHRs, that is, in static collections of health information. Rather, consumers/patients want service and value based on the content of their own data. They’re not looking for technological experiences with their computers or websites. They’re looking for ways to save money, get better information about care providers, and have a better experience with the health care system. Consumers don’t want online banking: they want what online banking makes it easier, faster, or more enjoyable to do. Similarly, patients don’t want online medicine: they want what online medicine enables them to do with their health and wellness data, which in turn will improve health and wellness. This includes being able to converse with their doctors.
It seems difficult, if not impossible, to include everybody in the room that should be there, and of course the comments section noted three groups not represented at this meeting: CMS, EMR vendors, and actual payers. Since most of these 3 have significant weight to direct how changes are made to the healthcare system as a whole, it would’ve been nice to have them in the room. Or at least a few representatives.
I don’t know what to make of meetings and conferences like this. I think they are great opportunities to socialize, network, and meet others who are in a similar space as oneself. But I have almost never seen anything concrete come from such meetings, other than getting people to think about these issues more (and perhaps, for a few people in the room, think about things in slightly different ways). Especially when you have 200 lb. gorillas in the room like Google and Microsoft, who worry more about marketshare and increasing shareholder value, rather than a long-time or historical interest in improving healthcare.
Don’t Get Sick in Massachusetts
You’d think that any state that boasts a city like Boston that has as many teaching hospitals and world-class hospitals as Boston would be one of the best cities to get ill in and partake of that excellent medical care.
Well, you’d be wrong.
According to a report the Globe reported on yesterday, the overall death rate for the state’s hospitals was 7 percent higher than the national average.
Ouch. That hurts!
What hurts even more is the lack of transparency of the information that would allow consumers and e-patients to make an informed decision about which hospital to visit in Massachusetts to avoid an untimely death. The report did not identify hospitals by name.
So we don’t know whether you should avoid Mass. General and go to Beth-Israel instead. Or avoid Tufts and go to Brigham and Womens instead. Why should you care? Because:
The analysis by a prominent Cambridge research organization also found wide variation in death rates among Massachusetts hospitals, with patients about half as likely to die at some hospitals than at others.
Wow, I mean, that’s a huge discrepancy. I’d really like to know what hospital I could be twice as likely to die at than another, but the report, the Institute, and the paper aren’t telling me. Nobody is. Well, hospital report cards might tell me, but it’s odd that a report of this nature isn’t providing the singular piece of information ordinary people would like to know. I wonder why?
The institute collects data about patient care from Medicare and hospitals, and uses demographic and health characteristics to adjust the data to allow comparisons among hospitals. It provides the data to hospitals it works with on quality-improvement projects.
Ahhh, that’s why. For hospitals’ eyes only.
Too bad for us.
Should Ordinary People Give Medical Advice Online?
Wow is all I can say. When I came across this discussion on MetaTalk, the discussion site for an old community blogging site called MetaFilter, I was taken aback.
The discussion is about how “wrong” the people who responded to a request for opinions and advice about a mental health issue were. The post was written by a physician, naturally, who suggested there should be greater caution in people offering their opinions (and even diagnoses) on medical or mental health issues where they don’t have a full and complete history.
Now, of course, on the face of it, this makes common sense. Nobody, not even doctors, like to go around offering their opinions about things on the basis of little information. But sometimes that’s all we have to go on, and people just want some ideas.
I don’t honestly think that at the end of 2007, anybody goes on to any “Ask” or Q&A site asking about a professional concern (whether it be medical, mental health, legal, plumbing, electrical, relationships, career, etc.) and not know that a lot of the responses they will receive will be non-professional and “from my own personal experience.” That’s one of the joys of Web 2.0 — everyone can be and often is an expert.
Some communities, like Yahoo Answers, have built-in tools to help readers rate answers they feel best capture a legitimate and useful answer to the question posed. It is these kinds of tools, and not disclaimers or efforts to clamp down on answering mental health or medical advice questions, that are the future. Because people will always ask such questions, it’s just a question of where they do it and whether such an environment can provide tools or options to make it a good, safe environment.
Susannah Fox on ePatients and the Health 2.0 Revolution
Not sure how we missed this (bad blogger!), but our own Susannah Fox from the Pew Internet and American Life Project was interviewed for HealthDot a month ago. Check out the interview here.
What Would Your Ideal Doctor Rating System Look Like?
Dr. Bob Wachter over at the Health 2.0 blog has an interesting entry about doctor rating sites, which are popping up like dandelions in summer.
He reviews a lot of the current efforts underway, including Zagat’s recent announcement they would get into the doctor rating business. But perhaps the most interesting part of his article is where he describes his own ideal rating system for physicians:
The stakes are immense, and a balanced approach is more likely to bear fruit than any single peephole. Ultimately, if I’m choosing a doc for me or a loved one, I’d like to know it all: bedside manner (4 stars from Zagat), structural measures (is the doctor’s office computerized?), process measures (are diabetics getting statins appropriately?), surrogate outcomes (what’s the average hemoglobin A1c?), and hard outcomes (what are the risk-adjusted mortality or hospitalization rates?). And then I’d like the appropriate specialty board (ABIM, American Board of Surgery, etc.) to tell me whether the physician is meaningfully engaged in quality improvement activities, and how well he or she did on the certifying exam – the best measure we have of knowledge and clinical judgment. Yes, you heard me right: I’d like the Board to tell me whether the doc was in 5th percentile on the certifying exam or the 87th. It doesn’t pass the smell test to say that we consider both these board certified docs to be undifferentiate-able. In this new era of transparency, if we physicians would want that information before choosing a doc for ourselves (and I sure would), then I believe that patients should have access to it as well.
What do you think of this suggested system? How would your ideal rating system differ?
Health 2.0 and Privacy Lost
In all the hype surrounding the latest Internet bubble, we’re faced with user-generated content and meaningless marketing terms like “Health 2.0″ which are used to suggest everything and nothing all at once. Whatever definition of Health 2.0 you can come up with, I can point to examples of such sites or services back in 1999. Or, if you push me hard enough, 1992. Everything old is new again is my philosophy when it comes to the Internet. The cycle is much shorter than in other industries (the last big online health push was exactly at the bust of the last Internet bubble, and then WebMD emerged as the winner).
But what really concerns me is the increasing connection between real people and the health information they post online, with apparently little understanding or concern about the real-world effects of sharing such information in public, searchable databases.
For instance, yesterday I blogged elsewhere about how Facebook’s latest privacy intrusion was actually much worse than it at first seemed. Some people don’t connect the dots, though. If Facebook — the most popular social networking website online at the moment — can do this and get away with it (even if it’s only for a week or two before they roll it back and roll it out later on under a different name with different controls), guess who else will be trying out these new technologies soon enough?
Well, everybody online. And that includes all these health companies encouraging you to sign up for their own personal health record or electronic medical record. Because while everybody likes the nebulous idea of an electronic medical record, very few people are actually managing their own. And for good reason. It’s hard work and requires inputting a lot of data manually, consistently, and reliably. Over time. For each member of your family. Last time I checked, most of us weren’t up for the additional part-time (free!) task of data input analysts.
But here’s the real kicker. Once you actually input all that database into a single company’s online database, you have zero guarantees about what happens to that data once entered. You heard me right — zero. You may be thinking, “So what? Who cares who sees when I last got a flu shot?” You may also be thinking, “Really? They have a terms of use or something on their site that says they’ll never share that data…”
First, about that flu shot. You’re right, many people won’t be interested in when you got your last flu shot. Except people who sell flu vaccines. Or researchers needing research subjects of people who get flu vaccines. And of course, the flu is the least of your worries. What you should really worry about are more serious health data, like high cholesterol levels or high blood pressure, simple everyday data that could mean you could pay double your annual premiums if a health insurance company ever had access to that data. Even if that data was “anonymized,” companies have an amazing ability nowadays to cross-reference multiple databases to pinpoint the individual identities of people without access to their names, DOBs, or social security numbers.
You’d think this was crazy if it weren’t true. But it is. Look no further than online health websites that also try and sell you health insurance (and, at the same time, ask you to fill out a free health profile!). Why else would an informational or social networking health website be in the insurance business?
Second, about that terms of use and privacy policy that is supposed to shield you, the user, from bad stuff being done with your data. I can tell you point blank that everyone of those terms of use and privacy policies don’t shield you from the company being acquired (which happens all the time to Internet startups) and having a new terms of use and privacy policy posted that offer no such guarantees. Guess what most consumers do when they get a notice about updated terms of use or privacy policies? They ignore them. We did an informal survey last year on our own website about how many of our members actually read either the terms of use or our privacy policy before agreeing to them. The number was staggering — less than 5%. So if nobody is really paying attention to them, then companies can get away with all sorts of privacy shenanigans.
Which is exactly what Facebook tried to do and what others will constantly try to do as long as their is the incentive for increased revenues and therefore increased profits from doing so.
It’s harmless information when it comes to buying shoes or knowing you like fly fishing. It’s potentially far more harmful information when someone outside of your “social network” discovers you’ve been treated for depression 4 times in the past 6 years.
What’s the answer? I’m not certain. But my advice is to tread very carefully in who and where you share your personal health information with for a few years, and to err on the side of caution rather than ’sharing’ with these services. Because unlike fly fishing, your health is your very life.
white paper
e-Patients:
How They Can Help Us Heal Healthcare
