The March 4 issue of the New England Journal of Medicine includes a letter from Brad Hesse, Richard Moser, and Lila Rutten, three National Cancer Institute researchers whose work is a continual inspiration to me.
Their analysis of data from the Health Information National Trends Survey (HINTS) shows that the vast majority of Americans, “despite a decade’s worth of exposure to health information on the internet,” continue to trust physicians. Don’t you just love the word “exposure,” as if the internet is an infection let loose on the population?
Another favorite passage includes a citation of a 2008 study: Does the Internet displace health professionals? Yes? No? I’ll never know since it’s behind a pay wall, but I suspect it is being cited with the same “silly rabbit” tone I’m seeing associated with that awesome 1995 Clifford Stoll “hype alert” article making the rounds this week. Hesse, Moser, and Rutten seem to be reassuring NEJM readers: Don’t worry, you are still #1 in your patients’ hearts.
But hold the smartphone: Guess which source consistently comes out on top when people are asked where they actually turn first for cancer information? The internet!
The HINTS data dovetails with one of Pew Internet’s consistent findings:
The internet does not replace health professionals.
But the kinds of health information sought and found online are different from what people can glean from most traditional sources.
Six in ten e-patients access peer-generated health information such as blog posts, doctor/hospital ratings, podcasts, or customized health news updates.
The HINTS researchers conclude by connecting their findings on doctor-patient communication to national health IT investment. Sure, that’s a valid finding, but I think they are being too modest. HINTS and Pew Internet data show that the internet offers much more than doctor-patient communication. It is a just-in-time information device that people can tap into wherever they are, whenever they need it, connecting with whatever source they believe will help them at that moment. And that source is not always a doctor.
Susannah, You are a brilliant writer. Love to read your stuff. Would read it even if it wasn’t in my area of interest. Realized I don’t tell you that often enough.
Thank you, Cheryl! I’m trying to live by the philosophy that most conversations worth having are worth having in public. I learn as much from the comments & questions I get as I do from my research.
As long as physicians spend an average of <1 minute during the average office visit providing patient instruction, and over 50% of patients walk out of the primary care physician's office without understanding what their doctor "told them," there will always be a need for secondary health information sources like the internet.
A personal note about the use of the internet as a primary information source for cancer. Unlike most other conditions, a diagnosis of cancer involves a series of tests, radiology procedures and physician visits/second opinions that occur over a period of weeks to months. During that "wait time" until a diagnosis is confirmed, many suspected cancer patients (and their loved ones) are frantic for information and turn to the internet…for better or worse. I say worse not because of the quality of info but because of the quantity of info much of which does not agree. The net result is being overwhelmed and severely depressed…at least initially. I speak from experience having helped my wife – a 6 years survivor of Stage 4 Lung Cancer survivor (NSCLC).
Physician have only themselves to blame should the day come when the internet or other health information sources become more credible or sought after.
Check out my blog Mind the Gap which deals exclusively with the issues surrounding Physician-Patient Communications at…http://healthecommunications.wordpress.com/
Steve, thanks so much for your comment and for the link to your site. Every post is packed with evidence and insight.
Everyone, go there now:
http://healthecommunications.wordpress.com/
“Physician have only themselves to blame should the day come when the internet or other health information sources become more credible or sought after.”
I think we, the patients, share that blame, as well.
We all stood by and bought into the cost-sharing scheme when employers first became health plan administrators. We liked the health benefits and we even made employment decisions based upon who had the best “benefits”.
We asked to share our risk of a health-related financial calamity. But by sharing the risk, we had to surrender some dollars, and more importantly, some of our autonomy. The group with whom we share the risk must have an administrator to decide how to spend the group’s dollars.
Like the frog in the pot on the stove, we found ourselves boiling mad…a bit too late.
Our autonomy was already forfeited.
I believe the only way to reassert yourself as the master of your healthcare destiny is to buy a very high deductible policy. Your healthcare autonomy is directly proportional to your deductible. Mine is $10,000 and I make the calls up to that amount. I have to shop for the right doc, but more and more, docs like the sound of cash.
I have refused tests and procedures that I believe are superfluous. Stupid? Maybe. But, that’s my call.
We get the healthcare we demand. We demanded the group health mess. I think it’s time to demand better. You just might get it. 😉
Ben out!
Dave, I came by tonight because you tweeted the video. Just watched it with my son, laughing. We had to laugh because I grew up insided the “beltway bubble” and this “internet distortion field” is blowing my mind. I always only saw the other side of it – that the information, that was never available before that the net, is what OPENED up the whole world to us – never that it was a filter, just like everything can be. Thanks for a great discussion.
Steve, I subscribed to your blog. You said: “Physician have only themselves to blame should the day come when the internet or other health information sources become more credible or sought after.” Sometimes, I think about writing a book just to tell about the poor examples of physicians who treated family members, being responsible for death or near-deaths. Then, I realize I’m using my time in a more valuable way by helping others find answers…
Susannah, thanks for a fantastic discussion.
Kelly,
Thanks for your comments. Great work with your RA blog too! If you ever need any stats for your work let me know.
I have to tell you that awhile back I was doing a blog for a company on cancer survivorship (my wife is a 6-year Stage 4 Lung Cancer Survivor which is almost unheard of). As I would talk about my wife’s and my experiences navigating the health care system I would have physicians actually call me a liar saying that there was no such thing as a Stage 4 Lung Cancer survivor. I could only respond that I was glad they weren’t my wife’s doctor. Like you I think we are better served by passing our knowledge and support along to those most in need.
In all honesty it isn’t necessarily physicians’ fault either. They all operate with the skills and knowledge they have. Consumers need to get smart about what they can realistically expect from their physicians. Always get a second opinion for serious conditions and always go to the doctors and hospitals that specialize in your area of need that treat the greatest number of patients with your condition. Nothing breeds success like success.
Steve,
Thanks for replying to me. You said, “Not physicians fault” – I don’t mean to throw stones at physicians. And, just to be safe, I acknowledge these comments may only be applicable to Rheumatoid Arthritis, my area of expertise. I’m not making broad assumptions if they don’t apply…
Early treatment is the only hope for remission of RA or diminished damage. “Early” enough may be anywhere from 6 weeks to 6 months. After that, the disease course may be set. http://www.hcplive.com/rheumatology/articles/early_treatment_of_RA
Every day, I get comments, emails, and messages from people who were dismissed by several docs over a period of years in search of a diagnosis. The average period between disease onset & treatment is hard to nail down. I’ve read reports that put the average at 9 months to 3 years, depending upon country. (Just last week, the UK’s TimesOnline had an article about how ignorant GP’s are of RA: http://www.timesonline.co.uk/tol/news/uk/health/article7037061.ece )
Every day, I hear from folks who tell me it was years of suffering and hard work to get diagnosed. Their damage & disabiity are permanent. I’ve never heard of an RA patient suing a doctor over mis-diagnosis. Yet, doctors seem to have an irrational, defensive reaction to patients taking their own lives into their own hands & using the internet to search for answers. http://rawarrior.com/epatients-role-in-healthcare-social-media-do-doctors-hate-blogs/
As Ted describes, they are “comparing.” They do so in many cases because what they have been told by their doctor is incomplete or inconsistent with what they know to be true. With RA, diagnosis is just the beginning – it is a complicated disease. It’s shocking how often specialists give bad information: http://rawarrior.com/my-quest-for-answers-to-questions-about-rheumatoid-arthritis/
Yes, there are some internet savvy docs & it’s not surprising what Brad said: “We also have data from HINTS suggesting a positive correlation between patients’ ratings of physician quality and physicians’ interest in Internet information brought into the encounter.” Patients aren’t trying to get an upper hand. They just want to get well.
My USMC dad used to say, “Damned if we do. Damned if we don’t.” It really does seem like we (patients) are being told to stay in the back of the information bus. We won’t.
(Thank you to anyone who reads this. I’ve moderated long comments on my blog, but this is my 1st time being the guilty party.)
Brad & Susannah,
I have the distinct impression that informed patients become much better patients and develop much better interactions with providers who accept the Sands principle of knowledge symmetry. In other words, the best interactions between patients and HC professionals can happen only if the patients are informed, educated and activated about their health condition(s). Do you have any data that con/infirm this theory?
We have a vague understanding that patients will lie more easily to their docs if they don’t trust them. The research conducted years ago by the Life Raft Group was particularly edifying in that respect. Since most people now visit first the Internet, does it make them more or less compliant than in the pre-Internet days?
We are getting some data from our Centers of Excellence in Cancer Communication Research Program on what types of online interactions can, in fact, instill a sense of patient-activation and a more enriched P-P interaction. A lot of it comes down to three main elements: a) enabling a sense of autonomy in decision making, b) enablingh a sense of personal mastery over information and tasks, and c)enabling a sense of true connectedness to others. We also have data from HINTS suggesting a a positive correlation between patients’ ratings of physician quality and physicians’ interest in Internet information brought into the encounter.
Brad,
Do we know what is the impact of the 3 elements together on patient attitude about themselves. I am asking because of an article just published in the March edition of the Journal of Thoracic
Oncology (JTO). The research,focused on lung cancer patients, explored the importance of a patient’s outlook as it relates to health behavior and health status and not surprisingly discovered that those who exhibited an optimistic disposition experienced more favorable outcomes than those with a pessimistic disposition. (see http://www.medicalnewstoday.com/articles/181225.php)
Gilles,
The informed patient with the same knowledge as the the doctor (usually) implies a high level of cognitive involvement as a prerequisite to being a better patient.
If symmetry in knowledge is a predicate to becoming a “better patient” how do you explain that segment of the population that 1) has a “high trust” in their physician 2) does everything their doctor says but 3) are not very cognitively involved in their health or health care (meaning they simply do what they are told).
So too how would you explain the phenomenon of the “expert patient” whose knowledge may exceed that of their clinician in certain instances like cancer.
Research suggests that outcomes are important irrespective of who knows what. The goal is to find the best possible outcomes that are consistent with the patient’s preferences and abilities.
I should have added that the segment of the population I cited with high trust, high compliance, low cognitive involvement can also have as good an outcome as the informed and activated patient.
That statement, Steve, is certainly not true if you are dealing with an orphan disease. Your outcome, if you are not a networked e-patient, will be significantly worse, because almost certainly your HC professionals are not equipped to help you.
Yesterday Susannah called me Chief Radical. That’s true but mainly because I represent many people who are in the long tail of medicine and don’t have the luxury of remaining uninformed, disengaged and passive recipient of medical care. We should all remember that although they are hard to find individually, they represent a distinct minority of between 32 to 40 million individuals in the US. I am sure that their voice is under represented in all the studies.
Susannah & Brad, could I be even partly right?
Love this conversation! I agree with everything here – with a twist. I call it the Marcus Welby Conundrum.
I think most patients WISH they could go to their physicians first. That’s based on upbringing and tradition. But because they can’t (for so many reasons) they go to the Internet first. The reasons they cannot are varied: the physician may not be available (time of day, can’t get an appointment, too little time spent, etc), they may not be able to afford it (no insurance, too high co-pay), they may be embarrassed, they may be traveling, they may not trust their physicians, and others. All in all, the Internet offers the most information for the least investment in time (wait time or face time), money and/or emotion.
Physicians don’t have control over ALL the reasons a patient would choose the internet first. But it would definitely be interesting to survey just those patients who use a concierge primary care doctor to see what their preferences are – it might give us more info about the disconnect in survey responses Susannah reports.
The need for physicians will never go away as long as we are dependent on them as filters and gatekeepers. We can’t get tests or prescriptions without them. But until they begin to shift their attitudes toward patients’ use of the Internet, the divide will continue to grow wider between most e-patients and their doctors. Sad, but true.
Trisha Torrey
Author: You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Health Care You Deserve)
Trisha,
Thanks so much for expanding our quick Twitter conversation into this thoughtful comment. I really like your idea of segmenting the patient population – I’ll definitely consider this when Pew Internet is designing our next health survey.
It is often difficult if not impossible to get an appointment with your own physician when you are really sick. No matter how good the doctors, they have a brigade of people keeping their appointment books for them: “his next available appointment is in two weeks…”
We are expected to believe that all doctors will be equally good, that seeing a physician we’ve never met before and who only has scanned our chart briefly will end up as optimum care for us.
I think it’s this problem (among others) that leads people to hit the computer – this, and the lack of time a doctor can spend with any one patient. If we are VERY lucky, we find someone who will see us on little notice.
It took me way too many years to find an internist who figured out that I really did know when I was very sick, and who sees me (himself) the next day. I don’t want to see his partner(s) who have no experience with my symptoms.
Also, when you really do have illnesses – whether it’s cancer or something less insidious – you have two roads to take. One is to accept at face value everything your doctor tells you, and never question anything. The other is to become an informed patient and at least understand what’s going on.
I go to the internet and to many other sources for information, and often ask my doctor about what I discover. I’m lucky – this doctor doesn’t become threatened!
We’ve (in collaboration with Jim Burroughs at UVa)just closed a survey of about 2,000 chronic disease patients looking at the “engagement” issue (ie, who plans for their visit with the doctor, who speaks up when at the doctor etc..) and some key psychological factors (need for cognition, reliance on social comparison, social connectedness) and of course use of media (not just online). Just crawling through top line results now but one of the interesting factors emerging is how the internet is used for social comparison (is what my doctor recommended something that other have been told? Does this seem out of the ordinary? kind of consumer “checking” behavior). We don’t talk much what needs are being met beyond looking up definitions of disorders and facts about drugs, but that is just the very tip of the iceberg. We look forward to sharing the full dataset with this group when it is crunched. So glad this community exists!
Ted,
you are certainly unto something fundamental. I, as Chief Radical Officer, am convinced that we have just started to touch the power of the Internet as a change agent. I am honestly not convinced that the tools we use to quantify its impact are the right ones and therefore there is a significant risk that we base our knowledge on incomplete understanding of the social and individual impact.
Those who follow this conversation should read “TIME TO START TAKING THE INTERNET SERIOUSLY” by David Gelernter. My favorite quote, which IMO, relates directly to this conversation:
Thanks to all for engaging in this conversation. Brad heard me say similar things many years ago at the NCI when I was clamoring twice a year for the need to conduct research on the impact of online communities at the COLT meetings.
And of course what is fantastic about Gilles is that he clamored so convincingly that he got his way eventually:
How Cancer Survivors Provide Support on Cancer-Related Internet Mailing Lists
http://www.jmir.org/2007/2/e12
And:
How New Subscribers Use Cancer-Related Online Mailing Lists
http://www.jmir.org/2005/3/e32/
Plus the incorporation of ACOR members’ insights in:
E-patients With a Disability or Chronic Disease
http://www.pewinternet.org/Reports/2007/Epatients-With-a-Disability-or-Chronic-Disease.aspx
I could go on…
Ted,
Check out the following article in the journal Health Communication, 23: 358–368, 2008 by Wang et al. entitled: Health Information, Credibility, Homophily, and Influence via the Internet: Web Sites Versus Discussion Groups.
The findings presented there tend to support your preliminary finding relative to the use of web-based social media for health information (and experience) comparison.
Steve Wilkins
Ted, thanks for sharing an early look at those results.
For anyone not following @healthcentral or @TedSmithPhD please check out their other recent paper:
Survey: Consumers call doctor first for adverse reactions, get prescription info from the pharmacy
http://www.healthcentral.com/about/study-consumers-call-doctor-first-adverse-reactions/
I am so encouraged by this blog. Thank you all for your insight into participative medicine. Patients and physicians together own what’s going on in healthcare.
We as patients have to take it upon ourselves to be informed consumers and physicians need to be open to sharing information with their customers, us!
The Internet is simply one vehicle that provides information. Let’s use it along with substantive conversations with our physicians to make informed decisions as to the medical care we need.
Keep up the great job of getting the truth out.
Thanks, Jonena, I’m encouraged by this blog too!
I’ve been reading & re-reading the comments and following all the links & suggestions for further reading. This is the equivalent of a master class in the impact of the internet on health & health care.
I was speaking with Kate Lorig this afternoon about her current work and while speaking about this blog post comments it downed on me.
A lot of what is happening on the Internet is really not measurable with the current set of tools. It is true that the Internet is not replacing health professionals because HC professionals have never been involved in most of the activities that people do in the health internet. These activities remain outside of the HC professionals radars because they are still unaware of the significance of the network effect. It would be fascinating to see joint work between Brad Hesse’s office and Nicholas Christakis.
I suppose that when Patty Brennan’s team will have enough data about the importance and breadth of the ODLs we will start to have a much better idea of the significance of the HC Internet supplantation.
I also suppose that, if the network effect is as powerful as I believe it is, people are turning to doctors with a constantly changing expectation about the doctor’s role.
As Brian Eno wrote recently “I notice that the idea of ‘expert’ has changed. An expert used to be ‘somebody with access to special information’. Now, since so much information is equally available to everyone, the idea of ‘expert’ becomes ‘somebody with a better way of interpreting’. Judgement has replaced access.”
For anyone who does not know the name Kate Lorig, it is as if Gilles had casually mentioned, “I was chatting today with Galileo…”
Here is her bio:
http://patienteducation.stanford.edu/lorig.html
And here is her introductory piece for the Journal of Participatory Medicine:
What It Will Take to Embrace Participatory Medicine: One Patient’s View
http://jopm.org/index.php/jpm/article/view/14/17
Susannah, another thought provoking post.
However, I’d like to share some insight from some patient focus groups my company ran involving patients that received a new diagnosis of diabetes within the previous 10 days (Oct 09). All patients (4 sessions, total n = 61) were asked to complete a short survey prior to their focus group session.
Less than 28% remember asking any questions of their doctor at the time they received the initial diagnosis, instead listening to what their doctor had to say. More than >85% of patients cited fear of appearing ‘stupid’, concern about limited time, initial shock and general intimidation as reasons for not asking questions at the time.
However, more than two-thirds of patients reported going home, discussing the diagnosis with family, and (either themselves or through family members) looking up diabetes on the internet and discussing it among themselves. Rather than doing this to develop their own care plans every single patient, without exception, said they did so to have a more informed and productive discussion with their doctor at their next visit.
I would actually interpret these results as being consistent with both your reported statistics and the NEJM article. The internet is filling the role that the local library used to serve, providing patients with a more easily accessible, less judgmental, more patient, and sometimes more up-to-date source of information than a doctor. However, the overall goal of self-education is to have a productive discussion with doctors who are still trusted to drive the health plan for the patient. The doctor can still be a trusted healthcare provider but not necessarily the ideal healthcare educator.
We resurveyed patients 1-month later to look at whether they sought diabetes information from the internet AFTER their second doctor visit with their doctor. This time, less than 36% claimed to have done so.
This comment is yet another example of why social media is an essential tool in my work.
There is no way I could have known about this proprietary research if DarthMed did not share it. There is little chance I could keep up with the published literature without pointers from colleagues, such as those who have commented so far. And my research & analysis would be poorer for it.
We need all these threads to come together: medical journal articles, industry studies, public opinion surveys, patient stories, health professionals’ perspectives. Thanks so much for joining me in asking questions and sharing what we each know.
Thank You DarthMed!
You confirm that gaining access to the Internet changes the nature of the interaction between patients and health professionals.
That is really part of the tectonic shift and that is why Participatory Medicine can only exist and grow with networked e-patients.
I wonder how long it will take to see changes in all medical school curriculums integrating the changing roles of the patient and HC professionals in the care process.
DarthMed,
Thanks for sharing your focus group findings. Your findings are consistent with with numerous studies which show that the “average” patient asks their doctor very few questions (if any) during routine office visits irrespective of medical problem. The reasons given include those you cited…fear of looking stupid, sense that the doctor was pressed for time, etc.
I am curious if you explored ways of increasing patient participation (e.g, question-asking) during the medical interview?
“Pocket book polling” is showing evidence of the public embracing online treatment venues. I wonder if these other polls are measuring the appropriate demographic or the level of comfort with technology in general.
Our company hasn’t even begun to market our SleepCoach service (www.sleepcoach.net) and already people are signing up and referring their friends. There is also evidence from increasing sales of online behavioral therapy and LifeCoach services to major insurance companies and EAPs. Although behavioral health may be more amenable to online work than say, cancer treatment.
Working for an online company that delivers a continuum of care both online and off-line, I stay very conscious of not “drinking the cool-aid.” Our company needs to be grounded in the reality of where the market is going. Three sets of data offer strong evidence that the future is in some form of online medical delivery (at least in behavioral health). 1.The dollars spent by private paying individuals in the US, Canada and overseas, points to a dramatic rise in the use of online treatment. 2. Major insurance companies are spending millions on the development of online products. 3. State entities are reaching out to us to create virtual online service delivery systems.
Polling is only as good as the methodology of the polling, the questions posed, the population questioned and the sample size. Our “Pocket book” research could possibly be measuring early adopters of technological solutions. But it is clear that they are adopting in droves. Combined with the overall trends in email and internet usage, it is a just a matter of time before online delivery of medicine is mainstream.
Will this displace providers? I don’t think it will ever replace them. Our model is to provide an integrated continuum of care so people can do self-help and then reach out to a professional when they need one. I think humans will always want a bit of the human touch.