In May, I spoke at the Chronic Care and Prevention Congress about my most recent report, “Chronic Disease and the Internet.”
I talked about the social life of health information and the internet’s power to connect people with information and with each other. Living with chronic disease is associated with being offline – no surprise. What’s amazing and new is our finding that if someone can get access to the internet, chronic disease is associated with a higher likelihood to not only gather health information but to share it, to socialize around it.
I built my talk around two examples of how health care can either take advantage of patients’ shared wisdom (and innovate) or ignore it (and fail).
My innovation example was CureTogether’s crowd-sourced migraine findings: 147 treatments were evaluated and ranked according to their effectiveness and popularity, with some surprising results. My fail example was taken from Diana Forsythe’s classic essay, “New Wine, Old Bottles.” Designers of a migraine information resource asked a single doctor what he thought patients should know, rather than going directly to the patients. Not surprisingly, the number one question asked by newly diagnosed migraine sufferers was not addressed: Am I going to die from this? Ridiculous to a doctor, but essential to a patient.
My talk concluded with a challenge to the group:
If chronically ill patients can find ways to connect and learn from each other, why can’t your organizations find ways to connect and learn from them?
Allan Khoury, MD, PhD, Chief Medical Officer of Walgreens Take Care Health Systems, asked me one of the first questions:
Should Walgreens train people in how to use PatientsLikeMe?
Whoa. Tipping point moment. Imagine the scene:
Here’s your new prescription for your life-changing diagnosis, ma’am, and here’s someone who’s going to show you how to track your symptoms and make sure the treatment is working for you.
Back on Earth, I hedged. I hadn’t even mentioned PatientsLikeMe. I’m not supposed to make sweeping judgements. So I did what I always do when I get a good question. I shared it.
First, I tweeted a more general version:
Intriguing Q after my talk: should Walgreens offer internet training, advice re pt communities? #hcsm
Joanna Ptolomey, via Twitter, voted for health literacy training “where people are living, working, existing.” So did Shelia Cotten. Mark Hawker clarified, “There’s a difference between training and education. Would need to be a combination to be beneficial in any way.”
But what if I had tweeted the original question, with its focus on PatientsLikeMe? Would it have invited a different response, one more focused on privacy, such as this quote from a recent New York Times story, “When Patients Meet Online, Are There Side Effects“?
You don’t know who is being paid to moderate. You don’t know who’s listening in to your conversation. You don’t know what exactly they are focused on and what they are doing with the information. – Jeff Chester of the Center for Digital Democracy
Frankly I was more interested in the general response, whether someone had a small patient community in mind, like a Yahoo group, or a large one, like MedHelp, Inspire, or Diabetic Connect. (Plus we’re already having that privacy conversation elsewhere.)
The second thing I did was to email my friend Maxine Rockoff at Columbia University, who is one of my health education and internet literacy gurus. She sent back an amazing email with as many questions as answers: Should we teach general internet skills or hone in on specific tools, such as a personal health record or a certain community? And, of course, she also shared the question with colleagues, with amusing (and circular) results:
This morning I threw the question out at a Department of Biomedical Informatics faculty meeting and one response was “Go to the e-patient web site.” So that brings it right back to you. What would you and Ted Eytan and Dave deBronkart do?
The third thing I did was talk with Alexandra Carmichael of CureTogether and Jamie Heywood of PatientsLikeMe.
Alex saw this as an opportunity for behavior change and patient empowerment on a massive scale. She pointed me to BJ Fogg’s Behavior Model which “shows that three elements must converge at the same moment for a behavior to occur: Motivation, Ability, and Trigger.”
She noted that a newly-diagnosed patient, standing there with their new prescription, may have the motivation to reach for a different level of involvement in their health. Walgreens has the ability to be there, at the moment of motivation, and provide expert advice. Alex said the offer of patient community training at Walgreens would be a “hot trigger” – an irresistible opportunity that someone can take action on right away.
Jamie’s first reaction: We do not comment on ongoing negotiations. (I think he was kidding.)
He then pointed out that of course this makes sense as much for Walgreens as it does for patients:
“The formal medical systems (both providers and payers) have generally chosen not to enter into a rich meaningful dialogue about health with their consumers (partly because they make so much profit from their proprietary networks and partly because they may not want to learn what consumers have to teach them)…
“This leaves a huge gap and you see the pharmaceutical industry, pharma benefit management companies, pharmacies, lab/diagnostic providers, and everyone in the health product business scrambling to understand and integrate into the emerging health information network. The good ones know that this is the equivalent to the introduction and rise of the search companies’ power on the internet. They know that the health information network, when it is fully connected to consumers, will drive most treatment decisions and determine the value and profits of health products.”
The idea of a huge drug store chain partnering with a start-up is not so far-fetched, by the way. Rite Aid is now offering online consultations with pharmacists via American Well. What’s next?
(Walgreens photo courtesy of Urban Jacksonville.)
The timing of your post is great for our staff. We’ve been discussing at least a couple of the topics you brought up.
1) We’re trying to figure out how to systematically connect patients with the support they need at “teachable moments” such as when they’re newly diagnosed at the pharmacy.
2)What happens if we systematically direct people to a specific online health community? What if it’s combined with an in-person support group such as Stanford’s Chronic Disease Self-Management Program?
Hi Grant – glad to help (although I think I raise more questions than I answer in this post).
Your questions reminded me of an article I’m reading right now about Esther Duflo, who runs randomized control trials about social policy. Yes, she borrows from medicine to find out what can best combat poverty.
Here’s an excerpt of the article:
http://www.newyorker.com/reporting/2010/05/17/100517fa_fact_parker
Here’s her TED talk: Social experiments to fight poverty
http://www.youtube.com/watch?v=0zvrGiPkVcs
What if you could run an experiment in two different pharmacies? In one, newly diagnosed people with diabetes (PWDs) get a flyer with some tips about how to find reliable health information online. In another, newly diagnosed PWDs get an incentive of some kind to join a patient community?
Researchers at the U. of Wisconsin’s CHESS have done this type of experiment with newly dx’d breast cancer patients and published extensively on their findings.
Just some thoughts to seed your office discussion!
Great post, Susannah! The only thing I would add is that I’d want not only a patient community site like CureTogether to be at a kiosk in Walgreen’s, but also other reference sites like Wikipedia, PubMed, etc, where patients can look up their treatments in more detail before or after purchasing them. Give people multiple sources of information on the spot to help them make their health decisions.
Holy e-patient, Batman: health references and patient communities at Walgreen’s?? Can you say “disruption goes retail”??
I’m not kidding – reasonably useful information on demand, right when the need hits you, no appointment required. It’s like the “just-in-time someone like me” that Susannah wrote about in March 2008.
And I’m not kidding about disruption in the strict Christensen/Hwang sense. Clay established long ago that a disruptive solution doesn’t kick butt on its own; it has to come with a new business model. For instance, IBM’s corporate computer sales team simply could not make the PC a success. Hm, seems to me that a Walgreen’s kiosk is a radically different way for consumers to access health info.
If the consumer’s ultimate need is to get their hands on health info, and the usual channel is through physicians (who are overloaded and costly), and the information becomes available at retail, as needed, in an infinitely scaleable delivery model (kiosks), that completely disrupts the old model for all non-critical needs.
Take another look at Doc Tom’s triangles and imagine that info coming to the consumer. And then remember that in White Paper Chapter 2, the “seven preliminary conclusions,” #5 is Whenever possible, healthcare should take place on the patient’s turf. Seems to me that BJ Fogg’s behavior model fits that like a glove.
I completely re-wrote that March 2008 speech on the plane to San Diego, one day after I heard Gilles Frydman use the phrase “participatory medicine” for the first time at the e-patients.net retreat in Texas.
In the video you can probably hear that I was as sick as a dog with the worst head cold I’ve ever had (or hope to have) but I was determined to say my piece.
You know what? I think I bought my arsenal of cold remedies at a Walgreens that morning :)
Fabulous conversation (Susannah sure is good at this)!
We’re in the process of developing kiosks at Diabetes Specialty Centers (http://diabetesspecialty.com) where people can reference general information about their condition, connect with others like them (we experimented with collecting and sharing stories via http://health.utah.gov/facesofdiabetes with meager success), and even record some of their unique questions and perspectives in that intense moment of being newly diagnosed etc. Your comments will definitely help us improve it! We hope to start their and then present the idea to other pharmacies and similar locations.
Thanks, Alex, and apologies for not putting that in the post — now I remember you saying it when we met here in DC.
I also didn’t put in the post what I replied at the moment to Dr. Khoury:
I don’t think PatientsLikeMe or CureTogether or most other patient communities require special training. The sites are user-friendly and pretty straightforward.
However, since Walgreens serves a client base that is not 100% online, basic internet training may be welcome, as would basic health literacy education. And if that training included pointers to sites that Walgreens judged to be high-quality and useful to patients, that would probably be another welcome aspect to their client base.
Thanks again for contributing your insights, Alex. The work you’re doing is clearly gaining traction in the wider world. Congratulations!
p.s. Susannah, holy crap, I had no idea Rite Aid was offering American Well.
The link you posted didn’t get me to that article in DrugStoreNews, but this one on the American Well site explains it.
Woah: it’s not just in-store; it’s for Rite-Aid patients. And I only recently learned that AW’s “brokering engine” can arrange visits by the web or by phone.
Definitely a pilot program – can’t remember the last time a press release used the “select…” qualifier (“in select stores,” “for select patients” etc) three times in the first paragraph. :–)
Thanks, Dave! I fixed the link.
I remember the first time I saw an American Well demo – in San Diego, at the Health 2.0 Spring Fling in 2008. Honestly? I didn’t get it. But now I do, esp. since, like Eliza, the service can be delivered over the good old telephone. In a way, that’s going mobile — 85% of American adults have a cell phone and if that’s how people want to receive their American Well consult or their Eliza reminders, so be it.
I like the idea of additional patient education and resources extending into a pharmacy. Patients already know that pharmacists, in close collaboration with physicians, are a trusted resource for everything from OTC medications on respiratory infections to serious drug interactions. It makes sense to have as many resources as possible helping patients improve their health.
FYI, everyone, I am going to be on “internet holiday” for the next two weeks. Please talk amongst yourselves and I’ll be back July 6 :)
Should patients know about and use Patientslikeme and Curetogether? Absolutely. But should pharmacies be the ones to teach people to use the Internet? I’m not so sure.
I think this question sidesteps the real issue, which is that physicians, pharmacists, hospitals and insurance companies need to recognize and respect the quality and value of information-sharing among patients. Sadly, many health professionals still look askance at E-patients who reference patient-reported data. This needs to end. If Walgreens can play a role in making that happen, it would be fantastic.
As a side note, we recently conducted a survey in partnership with ciscrp.org about clinical trials and pharmacies. Here are some of the results:
43% (1,143) of respondents reported that they ‘never’ talk with their pharmacies about their health.
86% (2,286) of respondents reported that their pharmacists give them information only about medication and insurance.
24% (625) of respondents reported that their pharmacist makes sure all their health questions are answered.
I don’t know that this is surprising. I’m one of the people who never talks with my pharmacy about my health. Anecdotally, this may be a generational thing. We haven’t analyzed the results to compare older people to younger people, but my guess is that we’d find older people more often look to their pharmacists as a resource.
So glad to see Inspire.com here, Brian!
I think something big is starting to erupt in this discussion and related ones. It hasn’t started to pop out in blog posts yet (much less in venues of more substance) but at its core is the (archaic?) idea that all medically useful knowledge emits only from clinicians’ mouths.
I’m starting to think that the more we (all) think about who’s really responsible for the individual’s health, the more we’ll see the value of possibilities like this.
There’s a tiny glimpse of it in this quickie post after I spoke in Toronto last week.
YES, we need to encourage and train and support health social media interaction; whether it’s PLM or CureTogether or Inspire or WEGO Health or (in almost every real world case) all of the above plus WebMD and 5 more. Engaged, empowered patients are better, healthier patients.
NO, not enough patients are online yet. Not enough are ePatients or Health Activists, and the notion that Walgreen’s could be their on-ramp is intriguing. Why not “talk to other people taking this medication” as a live, vibrant community, driven by the moment of Rx fill?
But if Walgreen’s (or CVS Caremark) are to get real uptake, they’ll do well to *aggregate existing communities* vs. spinning up yet another silo. Rather than add to the clutter, wouldn’t pharmacies do well to curate the oceans of conversation already in progress?
Agreed – that’s tweetworthy. Off we go.
After 3 years of using & observing online communities, my top takeaways are:
1. They can be *invaluable*, as in life-altering, truly valuable, spanning unlimited distance
2. It can be REALLY hard to find a good solid one that fits your needs.
In a sense it’s like the days of the web before search engines: a slew of useful stuff out there, but useLESS if you can’t find it when you need it.
This may be the Big Kahuna opportunity for people wondering how to transform healthcare by leveraging the power of patient communities.
Thanks for a great point, Jack.
Dave – you say it’s really difficult to find a good support group. I happen to be looking for a good article to reference on how to find a good support group. Do you cover this in, say, your new book? Or do you know where else I could find it?
I don’t have a sure method, no. There is an appendix in my book – written by my publisher’s wife, who beat cancer twice in recent years! But this is a field where “nascent” applies in spades.
(For those who don’t know, hat’s “emerging; just coming into existence.”)
English translation is in the following comment
Bonjour
Permettez-moi de répondre en Français, d’ailleurs, Susannah Fox est une excellente traductrice !
Je partage votre avis à savoir qu’il n’y a pas assez de patients sur le web. IL existe certes des communautés de patients importantes comme Patientslikeme. Un bon nombre de communautés sont aussi présentes (je pense aux Francophones) et méritoires mais avec peut-être, un peu moins de moyens financiers pour s’exprimer et donc un peu plus de difficulté pour rassembler et faire dialoguer entre eux un maximun de epatients.
Comment faire pour que les patients deviennent des “epatients”actifs ?
Est-ce que, déjà, les professionnels de santé sont actifs sur le web ? Conseillent t’il à leurs patients d’aller en ligne consulter des sites santé ? Je pense que non.
Pour ma part, il m’arrive très souvent, lorsqu’une ou un patient me pose une question pour laquelle je ne suis pas sûre de ma réponse, que nous regardions ensemble sur Internet, si je peux lui fournir une réponse valable.
Lorsque l’on a un doute sur une prescription médicale, sur une analyse de laboratoire… naturellement, le médecin est là en premier, pour renseigner mais aussi les pharmaciens.
Puis, vient la consultation en ligne des sites de santé pour en savoir plus à condition d’être bien dirigés et là, je pense, intervient la “Certification Honcode” des sites de santé pour guider les internautes dans leurs démarches quelquefois “labyrinthiques”.
Et, puis, n’oublions pas les smartphones avec lesquels l’accès à l’information est complémentaire.
(la traduction risque d’être un peu longue et fastidieuse.)
http://twitter.com/kiwfranc
“Traduction : google”
Hello
Let me answer in French, moreover, Susannah Fox is an excellent translator!
I agree with you to know that there are not enough patients on the web. IT is certainly important as communities of patients PatientsLikeMe. Many communities are also found (I think of Francophones) and meritorious but perhaps a little less money to speak and a little more difficult to gather and talk to them a maximum of epatients .
How to ensure that patients become “epatients” assets?
Is that already health professionals are active on the web? He commend advise their patients to go online consult health-related sites? I think not.
For my part, I very often when one or a patient asks me a question that I am not sure of my response, we looked together on the Internet if I can provide a meaningful response.
When in doubt about a medical prescription, on a laboratory analysis … of course, the doctor is there first, but also to educate pharmacists.
Then comes the online consultation of health sites to learn more if well managed and there, I think, comes the “HONcode certification” of health sites to guide users in their efforts sometimes “Labyrinth”.
And then, think of smartphones with which access to information is complementary.
Are we at the point where there are too many communities? If so, at what point do they begin to merge? Will online patient communities behave in the same fashion as financial mergers and aquisitions? Yes, this is a big moment for someone to figure out how to connect all these communities!
@Stales,
You ask “Are we at the point where there are too many communities? If so, at what point do they begin to merge?…”
What’s an organic process by which a “patient community finder” (or directory) might evolve?
I’m serious – wondering if WEGO for instance might want to host it.
IMO the Society for Participatory Medicine should, if we had the ooomph.
Maybe we SHOULD – design something, find donations.
Whoever does it, I’m certain it should just be a suggest-and-recommend platform, not something that the host should manage intensively.
Who? Any vendor want to become the go-to place for every medical crisis??
Susannah (hope you enjoyed your internet holiday!) / all,
I’m flattered to be mentioned alongside yourselves and Dave in any conversation about what people should do.
I suppose I would ask a “why?” question around intervention at the level of dispensing versus the level of prescribing.
Wouldn’t there be impact where the decision to prescribe takes place, at the level of the patient-physician relationship?
Jamie alludes to this in his comments above, about the gap that we currently see. What I would go for is closing the gap.
I wrote this blog post summarizing some excellent work funded by AHRQ and being performed by National Consumers League about the issue of drug adherence, which gives some clues about the phenomena of drug prescribing and problem solving using medications in medicine from the patient and physician perspective.
See what you think…
Thanks, Ted, I did have a lovely holiday offline!
Like you, I’m drawn to patient perspectives. Here’s a quote that caught my attention: “…sometimes when the provider is giving you all of this information you have so many other things going through your mind, like I have to take medication or you know at the end when you get to the pharmacy that you are going to get that pamphlet and you are going to look at the bottom to see what you take once per day.”
That was from a “short-term patient” who may not have a strong, abiding relationship with a health care provider and may see his or her pharmacist more often than they visit a clinic. That’s the scenario that Kevin Clauson has written & talked about as an opportunity for participatory medicine to spread further in the population.
In that case, closing the gap between the prescriber and the patient may not be an option. It’s an opportunity lost in the provider setting, but an opportunity gained in the pharmacy setting (and potentially, if a drug store provided tips about online patient communities, an opportunity gained in the home setting).
@epatientdave – Thanks. I’ll check it out. And I always love your birth metaphors. ;)
The core question seems to be: does it make sense to have community pharmacists provide health-related Interent training/education/guidance for patients?
Requirements:
*Pharmacists must be skilled on the Internet/knowledge management front (may require an ‘educate the educators’ approach)
*Pharmacists would need to be open (on some level) to the participatory medicine model
*Patients would have to be notified about availability of this guidance
Biggest challenge:
*Pharmacy chains would need tangible incentive for ‘removing’ pharmacist from traditional fee-for-service/billing for cognitive services roles in order to deliver this new enhanced service
Why it makes sense:
*Pharmacists are the most accessible healthcare professional and offer a regular, point-of-care type interventional opportunity
*Traditional drug information sources have migrated online and inclusion of patient communities, etc. could be a natural extension
*The process could be seamlessly integrated into the patient counseling that is (supposed to be) done with patients per OBRA ’90
Why it may not be ideal (ignoring legal & financial for the moment):
It may be easier to train/retrain other personnel to serve as Infoguides/Information prescription dispensers, etc.
It’s possible that the best way to approach this is to recognize that not all pharmacists (or physicians or nurses) will serve in this capacity. So, an established process like the Certified Diabetes Educator (CDE) program could be employed and specific pharmacies would be setup for this augmented health guidance (similar to specialized pharmacies/services that exist now with pain management, HIV, etc.). It definitely merits additional consideration.
@kevinclauson
Everyone, if you haven’t read Kevin’s post, “Why is participatory medicine such a tough sell?” please do so now. He has this topic of pharmacists’ role in the internet/health revolution by the throat:
http://pmedicine.org/epatients/archives/2010/03/why-is-participatory-medicine-such-a-tough-sell.html