Last fall, at the e-Patient Connections conference, I gave a sneak preview of some survey results which are set to be have been released on the Pew Internet site on Monday, Feb. 28. I hoped to spark new ideas for a savvy, plugged-in audience and I ended up surprising even myself with some of what I talked about. Watch:
Around minute 7, I share the results of a survey question that was inspired by some research conducted in 1999 by Tom Ferguson: E-Patients Prefer eGroups to Doctors for 10 of 12 Aspects of Health Care.
Here are notes about what I said if you can’t watch the video:
Tom asked patients who were living with a serious condition to tell him which advisers were the best at diagnosis: Health professionals or their online support group? Which were best at providing emotional support? Which were best at providing day-to-day tips about how to deal with symptoms?
Our national telephone survey results match Tom’s pioneering work: 9 out of 10 patients say health professionals are more helpful than fellow patients, friends & family when it comes to getting an accurate medical diagnosis. Only 5% of American adults say that fellow patients, friends, and family are more helpful for a diagnosis.
The picture shifts when we ask about emotional support in dealing with a health issue: fellow patients, friends, and family are the much more popular choice. And it is an even split when it comes to practical advice for coping with day-to-day health situations: professional sources like doctors and nurses rank pretty much even with fellow patients, friends, and family.
For example, one person wrote in an online survey: “I love to be able to talk to others who know how bad depression can be from their own experiences.”
By contrast, another e-patient does not find the community aspect of online health information to be useful, writing, “I don’t find chat rooms helpful because most people are sharing how horrible they feel and I am beyond that. I have bad days but I feel dragged down when I whine about them or listen to others talk about their problems with doctors, family, etc. I don’t have those problems.” This person uses the symptom- and medication-tracking tools available on the site, finding utility in sharing of a different sort.
I found that comment refreshing. So many patient community leaders have told me: we are about science, not hugs.
Around minute 10 I couldn’t resist a riff on a theme that inspired me at the Mayo Clinic Transform Symposium: Love is the secret ingredient to health.
Speaking of secret ingredients, there were a lot of people up there with me as I spoke, even if you can’t see them: friends and colleagues who have taught me about the power of sharing, like Tom Ferguson, Patti Brennan, e-Patient Dave deBronkart, and Regina Holliday.
Along with them were the thousands of patients who answered my survey questions over the years, both on the phone and even more importantly in writing, sharing their experiences so I could retell their stories about how they use ACOR, BrainTalk, PatientsLikeMe, HealthCentral or other patient communities.
Again, some notes in case you can’t watch the video:
Love is the reason why people want to stay healthy. It’s why they want to stay well. It’s why people feel compelled to share, to give each other emotional support, to track observations of daily living, to track how a medication treats them as an individual so others can learn from it. Because of love. Because we want to help each other.
What happens when we acknowledge that human beings want to share? That they want to help each other? They want to connect with the best medical advice available. And yes, they want hugs.
That’s chronic disease in the internet age. That’s health care out loud.
I can’t wait to share more about the upcoming report, which combines national telephone survey data with insights gathered in an online survey of people living with rare conditions. Talk about superheroes — I have been floored by the stories I’ve been reading, both in our survey and in a new book by rare disease caregivers: Uncommon Challenges; Shared Journeys.
I’ll post the report on PewInternet.org in time for Rare Disease Day (Feb. 28) and I’ll also start a discussion thread here about the findings.
I think every time Suzanne and pew comes out with new research, I think it is the most important read to date. This work, however, is watershed.
So much has been written about health seeker/patient use of technology — growth of usage, where they go, how we use technology. But only recently are we focusing on the basic, behaviors and needs being driven and why. And what new behaviors are manifest.
People are taking control of their health lives and communications because they can. And technology helps them do so and see that doing so works for others like them.
This is the health revolution in our midst.
These are exciting times, and I like your optimism.
Everyone, please see Chris’s piece in Fortune: “Is the Middle East the new land of opportunity?” http://finance.fortune.cnn.com/2011/02/16/is-the-middle-east-the-new-land-of-opportunity/
As Clay Shirky wrote in Foreign Affairs: “Access to information is far less important, politically, than access to conversation.” http://www.foreignaffairs.com/articles/67038/clay-shirky/the-political-power-of-social-media
I see a parallel in the data we’ve collected at the Pew Internet Project — people are telling us that conversations are powerful.
You’ve beautifully articulated something very important — that as humans we have a basic instinct to share, to learn from each other. Don’t get me wrong — I’m a strong believer in privacy and the right to be left alone — but many discussions of health information inevitably tilt toward the importance of making information private and secure without recognizing that the desire to share can be every bit as vital to one’s health and well-being. These are not either/or trade-offs, but critical design considerations that both need attention.
This desire to share and to learn from each other is finding new expressions, as you explain in your talk — from text-based information and electronic hugs to more data-oriented forms of sharing as in PatientsLikeMe — and, as smartphones and sensors proliferate, an even greater, more granular level of data sharing is possible. What we’re seeing through programs like Project HealthDesign and movements like Quantified Self is that it’s becoming easier and easier to record the data of your everyday life (observations of daily living) and the data tracks of our stories have power, both individually and collectively.
We all face choices about health tracking – do you weigh yourself? Have you ever kept a food diary? Do you count the number of drinks you have in the evening? And we face choices about how publicly to share information – do you tweet your weight? Do you share the food diary with anyone? Etc.
I like your point about design – understanding what the default setting will be is critical.
In addition to the famous examples (CureTogether, PatientsLikeMe, etc) there are everyday examples – your neighbor who thinks she might be lactose intolerant but isn’t sure yet, your friend who gets migraines and isn’t sure what the triggers are yet, etc.
One person who is thoughtful and makes me feel better about not being meticulous about my own attempts to track things: Ian Eslick. Here’s a great post he wrote about his approach: http://ianeslick.com/self-tracking-without-a-written-record
I’m looking forward to reading the report on Monday, and enjoyed the teaser you’ve shared here.
I agree that sharing is important, and that loving (not [just] being loved) is essential.
Back in July, a NYTimes article on sociable robots in nursing homes prompted me to think and write about Paro, personal robots, emotional intelligence and the need to be needed:
I believe that the sharing of health-related stories, especially about rare diseases, is an act of love … and, taking a cue from the NPR StoryCorps series, that listening is also an act of love.
Thanks for sharing your story from the e-Patient Connections conference.
Wonderful comment, Joe. I like it. What a mystery, the true nature of what holds us together.
Joe, I’ll add my thanks to Dave’s – lovely comment.
Did you catch Sherry Turkle on NPR’s Science Friday by any chance? She was talking about her new book, “Alone Together” Here’s the show: http://www.sciencefriday.com/program/archives/201102256
I was struck by some of the points she was making about attention and listening. She talked about how breastfeeding isn’t just milk delivery, for example, but a time when the baby senses his/her mom fully relaxing and being there 100%. I think that’s a pretty romantic view of the nursing relationship (I got a lot of reading done when I was nursing my kids) but it resonated. To listen with your whole self is to be relaxed, calm, and focused on that one person.
The current health care revolution is as much about uploads as it is about downloads. What are we missing if we don’t hear from the 60% of older adults who do not go online, for example? One respondent to the rare-disease survey wrote that their family has been living with a certain condition for over 100 years. Think of the shared knowledge passed down — and now shared online!
Thanks for the link to Sherry Turkle’s appearance on Science Friday. I haven’t listened to it yet, but I have started reading her book.
She writes about the insecurities and anxieties we often feel in F2F encounters, and how technology – in the form of online social networks or sociable robots – is often used to mitigate those risks.
Sharing information about rare diseases (or even more common diseases) can also be risky, given that in the U.S. health care “system”, anything you say might be used against you in denying coverage, especially for expensive treatments.
I do think, though, there are tremendous benefits in the act of sharing, both for the sharer and the sharee. I started blogging about my wife’s anal cancer treatment shortly after her diagnosis 5 years ago, primarily as a means to pre-emptive measure to reduce the number of individual phone calls or emails from family & friends who were interested in her progress.
On the one hand, I suppose this may be an example of the kind of intimacy avoidance that Sherry Turkle warns against, but I really didn’t want to invest the time and energy in repeated 1:1 sharing of information. The upside is that several people who have been diagnosed with anal cancer have expressed gratitude for being able to read a first-hand (well, close second-hand) account of what it is like to go through the diagnosis and treatment.
Several years ago, insights from Martin Buber that were shared and extended in the audiobook Your Heart’s Prayer by Oriah Mountain Dreamer prompted me to reflect on Oriah and Buber, I and Thou: Bringing All of Who I Am to Blogging. I think it is relevant to the idea of sharing information online, and the impact is can have on others … so I hope you won’t mind if I share a longish excerpt. In the context of my blog post, I inserted editorial comments applying their (Oriah & Buber’s) insights about art and music to blogging, but I think they apply to any wholehearted activity … including, say, designing, conducting and reporting on ground-breaking surveys.
BTW, Oriah now has a blog where she regularly shares her insights and experiences on a number of issues, including her challenges in dealing with Chronic Fatigue Syndrome / Myalgic Encephalomyelitis.
I really appreciate your comment last February below:
“What are we missing if we don’t hear from the 60% of older adults who do not go online, for example? One respondent to the rare-disease survey wrote that their family has been living with a certain condition for over 100 years. Think of the shared knowledge passed down — and now shared online!”
Did you receive any insightful or interesting comments in response?
Keep up the great work – I’ve been remiss in checking in on your site for awhile…thanks always.
The full research report is now available:
Peer-to-peer Healthcare: Many people – especially those living with chronic or rare diseases – use online connections to supplement professional medical advice
It’s the report I’ve been wanting to write for years and finally have the data to do it.
The idea was sparked by a conversation I had with a sexual health educator about 5 years ago who said that his research showed that teenage girls want to get advice about contraception from a “just-in-time someone-like-me.” I started gathering other research related to this (including of course the work being done by the aptly-named PatientsLikeMe.com)
The September 2010 survey was the first chance I got to ask the questions I’d been noodling over:
Have you…gone online to find others who might have health concerns similar to yours?
Thinking about the last time you had a health issue, did you get information, care or support from…a doctor or other health care professional? …friends and family? …others who have the same health condition?
Did you interact with them online through the Internet or email, offline by visiting them in person or talking on the phone, or both online and offline?
Overall, who do you think is more helpful when you need…[various health information topics and questions]–health professionals like doctors and nurses, or other sources, such as fellow patients, friends and family?
In addition, we were able to field a survey of the communities associated with the National Organization for Rare Disorders, the results of which were as insightful and helpful as any of the phone survey data.
Please read the report and let me know what you think!
“Overall, who do you think is more helpful when you need…[various health information topics and questions]–health professionals like doctors and nurses, or other sources, such as fellow patients, friends and family?”
The “Different Sources for Different Kinds of Information” section brings up an important topic:
My own experience was that in diagnosing my chronic illness I first relied on finding information on the Internet. Confirmation and discussion of treatment options was done with a physician specialist. Then I went to a patient community to explore the various options and then back to the healthcare professional to map out a treatment plan.
One of the biggest benefits from the online community to me, aside from sharing information and experiences, is also the encouragement to stick with the treatment plan. The emotional support provided by my friends and family on social media platforms really helped me get through those first difficult years.
Brian, you hit the nail on the head. Most people want technical medical information from health professionals and they want emotional support and practical tips from peer patients, friends, and family.
One aspect of what you wrote is really interesting to me: the role of peer support in treatment adherence (and the word some people object to: compliance).
People make daily choices about whether and when to take their meds, follow their diets, make it to their PT appointments, etc. I’ve heard about people who meet online daily to psyche each other up for a daily required injection. They say they don’t hate it less, but it’s easier to keep up with the regimen if their buddies are there with them (virtually).
Thanks again for the comment!
What a treat to be a part of your community! But all that you attribute to me really originates in the daily lives of that people who work with the Project HealthDesign project teams – they have taught me so much! Indeed, we have learned most from the people who experience health in everyday living and who use words and phrases to tell us about their everyday health experiences.
We – all of us – are in the process of co-casting a new vision for health and health IT. This vision is not bound to the confines of a pre-packaged EMR, nor is it limited to clinical signs and symptoms. We want to ensure that the patient’s voice comes through loud and clear — in the patient’s own words.
Many, many challenges remain before us as we figure out how to build the right clinical IT ecosystem that ensures safe clinical care and also provides interpretable, meaningful insights into health in everyday living. Nonetheless, your support and your public voice, Susannah, have taught many people many lessons: that health is more than the absence of disease; that health IT moves with people and does not tie them down; and that health data is ephemeral, vibrant and idiosyncratic.
Your current work on the experiences and needs of people with rare diseases is an inspiration to our team. We strive to continue finding ways to express the everyday health experiences that are personally meaningful to patients and to use the power of health IT to transform those words and narratives into meaningful conversations in the health care experience.
Everyone, if you haven’t visited the Project HealthDesign site recently (or ever) please do:
We’re all learning from those collaborations.
One short comment: The analysis is new, the behaviors are not.
While publishing this data is very important, it is equally important to note that people have been doing what is assessed here for more than 15 or even 20 years. In reality the behavior of people with rare diseases was to immediately embrace internet based communities as soon as they became available. It just happened, organically, because it was a natural development. For many years al of it was under the radar. That fact should not take away the significance of the massive number of early implementers.
Today we see a fascinating parallel developing with the use of social media by the Middle East youth. In both cases, the power of engagement and the willingness to forget about real privacy concerns are profoundly and instantly transforming the social maps associated with the communities.
Absolutely! It’s an ancient instinct to share – now people have the means to make it easy, to make it visible, and to make it persist in archives so future generations can benefit.
And some of the work done in the internet’s early days has not yet been topped. I’ve learned that from you, Gilles, as seen in these discussions:
President’s Cancer Panel: Input, Please
Another example is the mental health community, with online peer support groups and forums such as PsychCentral’s, active for many years.
Yes! The communities I named in the post are just the ones I have surveyed. There are many, many more examples of peer-to-peer healthcare.
One question I’d love to explore: What are the differences among dot-com/dot-org/dot-edu communities? There are certainly differences in look & feel, but how about member satisfaction?
Susannah, very interesting data. While I do think the trends towards using the Internet to find others who may have experiences similar to your own with respect to chronic disease are important, I’m still struck by how relatively low the overall percentages are as compared to those who do not use the Internet for this purpose. We took care of my mother-in-law for over ten years and for the last three, she was basically paralzyed and unable to speak. We used the Internet almost daily to check about symptoms mom was exhibiting or to understand better how various medications interacted. We used it constantly to help us check the information we got from nurses and doctors because candidly, we got different opinions quite frequently and did not know what to do in some cases.
But we never used it to reach out to others. The best tool for this is Facebook and we candidly did not feel comfortable putting more personal information on it that related to mom and our home care situation. There were groups around home health care that included discussion forums that could be helpful but we never took advantage of them, in part because we had family we could contact who could help us and offered solace or advice when needed. Our case may not be that common but on the whole, we used the Internet as an information and research tool and as our back up in dealing with the advice we gto from nurses and doctors.
Thank you, Link, for sharing your story.
One reason I like to pair phone survey data and patient community fieldwork is the opportunity to see the parallels and the stark differences between the general population and the e-patient population. The preponderance of the Pew Internet’s work in the area shows that the majority of people use online resources in the same way you do – wide-range information hunting & gathering, but close-range sharing. The question is, when does someone flip over into the super-user category and start sharing more broadly? Or start using different tools to do deeper research?
I’d love to hear from other people about their perspectives on these points.
The Peer to Peer report have some of the most interesting findings from the project since 1999. I would like to see a retrospect analysis on how the data squares with some of the data PEW collected for ehealth consumers in the past. My theory is that–as any one would expect–the PEW project has become more savvy and learned from its findings (not a big assumptions) and that your questions in this report, which you indicate you have been ‘noodling’ over for a long time, are more pointed and also seeking to discover new attitudes or yet undiscovered attitudes of the ehealth consumer. This is precisely what has happened, which I think is moving in the right direction. For example, on page 8 near the bottom, I find it interesting that issues involving “change” and/or “behavior change” and the need for support and/or coping assisting for change send people to seek out others in groups…other research data bears out that type of behavior off line among ill people in supports groups, e.g. for cancer, anxiety. The problem, and it is addressed in a recent article in the Journal of Medical Internet Research (vol 13 issue 1) by Brian Cugelman, is that it is difficult to retain people in groups, on line or off, particularly if they have a “change” related problem–meaning behavioral health–which we all know overlaps into so many chronic illnesses. How then do we engage epatient in order to retain them through the course of their illness–and help them adopt the behavioral changes that were part of their disease recovery? (DiClemente’s Stages of Change Model) Too often leaving the online group, or just recovery from acute symptoms, results into behavioral relapse that sets the pattern of ill health into motion again.
How to engage–and retain–the ehealth patient is an important question—that is for the ones who need to be engaged to stay on the journey to recovery.–Audrey
I will clip this into a comment next week
Oh, also, interesting response rates land versus mobile phones!!!
Thanks for the close read, Audrey!
To say that Pew Internet’s research in health has evolved over the last 10 years is probably an understatement. Some things remain the same: our commitment to excellence, to listening, to sharing, and to phone surveys are among the top 4 :)
For those who haven’t studied the methodology section: The response rate for the landline sample was 13.6 percent. The response rate for the cellular sample was 17.0 percent.
I’ll think about your other points and would welcome anyone’s thoughts on them – please jump in!
An excellent view of how important peer information sharing has become for many people. I had a couple of related questions which are probably outside the scope of the study but which seem to me to follow naturally:
* Have these online personal relationships among patients and caregivers led to improved treatment and outcomes? Perhaps even less costly outcomes?
* Related: have the clinical details of those sharing similar conditions ever been compared or evaluated in terms of identifying possible common causes?
The latter is fraught with privacy issues, I am sure. But the advantages that the net brings to overcoming isolation to those experiencing rare disease, for instance, could present researchers with information just as the connection provides previously unavailable emotional connection for patients.
Hopefully some other people will chime in with suggestions, but I cite a few studies which may be of interest to you.
See the footnotes in this section:
Rare conditions necessitate online consultation with peers.
Many thanks Susannah. Appreciate the pointers.
In a third-level comment above, Susannah asked something that deserves a more prominent place in the thread:
Thoughts, anyone? I’ve only used ACOR, personally, which is as low-tech and low-everything as it gets. My experience:
1. The community is fabulous. There’s never any question about why anyone’s there, and the moderator of my particular group is full of knowledge, tireless, and skilled at squelching idiocy.
2. But the platform is frustrating at times because the archives aren’t browsable. That also reduces how much good stuff I “bump into” while looking for something else – like the way you discover things while browsing a paper(!) magazine or newspaper.
Good question, Susannah, and a good idea to fetch it out of the third-level comment lair. Well, dot-com is for commercial so I’d suggest dot-com as the right TLD for sponsored communities like the French blog http://www.femmesavanttout.com (which is offline since a few months).
After my fancy dot-edu is too close to the secondary and tertiary sector. Plus you need an accreditation from an agency which is approved by the United States Department of Education, hard to get when you are not a college or university.
So what’s left? Dot-org could be used for a patient network, it fits in a semantically way. And what about dot-info? Health 2.0 is about spreading helpful information.
Just an opinion from Old Europe ;)
I’ve been involved in online community building for 20+ years (yes, before the Web), and have worked on both the dot org and dot com side of the fence. Tough for me to weigh in from the patient perspective, as I am not an end-user. But in my current role at Alliance Health I’m struck by our ability to identify, recruit and engage patients in condition-specific communities such as Diabetic Connect with a velocity that is very difficult for dot orgs to achieve, mostly due to resource constraints.
For example, we launched Diabetic Connect in 2008 with Amy Tenderich from DiabetesMine as our first patient advocate. Today the site has more than 400,000 members and adds several thousand each week. We now have three patient advocates actively curating the site, as well as two community advocates, one a certified diabetes educator, another the parent of child with diabetes. Gauging from metrics such as discussion forum activity, status updates, “likes”, virtual gifts, etc. we see increasing levels of patient engagement. This suggests our dot com domain may not be, as once feared, a significant impediment to user adoption. All the more so when you compare our usage metrics to nonprofit disease associations with significant “brand equity” and are similarly active in managing communities for patients and caregivers.
I don’t want to oversimplify the question. Trust is an issue, as well as concerns about privacy, advertising and other factors that can undermine participation. Different patient communities handle those issues differently, and certainly some better than others. But we also need to guard against oversimplifying what it means to have a dot com enterprise behind these community-building initiatives. If it can be done with respect for privacy, with a premium placed on the user experience, with an interest in improving outcomes — and all with a sustainable business model, I think that is a win for patients and caregivers regardless of the IRS designation of the enterprise behind it.
Great response, David. It aligns with my sense that it’s the community that matters more than anything else.
That leads to the question of how to build the community when all you have is a blank sheet of paper. Any thoughts on that?
Great question, Dave. We just launched 16 more communities so we are actively building membership and content in each of them. These include big categories like asthma and celiac disease to lupus and anxiety disorders.
Since the content on our social networks is mostly user generated their value is a function of our success in getting people engaged. That means a heavy focus on reaching out to people anywhere on the web who may be affected by the conditions we cover, either as patients themselves or as caregivers. We reach them in a number of ways. The key, as you know, is keeping them engaged once they’ve joined.
There’s no secret sauce there. We try a lot of different things and constantly tweak our tactics and messaging in response to what we’re learning.
As you mentioned, the user experience is critical. As are social hooks such as status updates, “likes”, virtual gifts, discussion boards, badges and other tools that reinforce the peer-to-peer connections described in Pew’s latest research. Personalized content and enewsletters serve as key touch points and keep people engaged.
I realize this is cursory. Tough to cover such a big question in a few paragraphs. But these are a few key pieces of the puzzle. I’m sure others here can add a lot into the mix.
Hi Susannah —
Thanks for your talk and the research on which it is based. I like how you (and Tom) have separated diagnosis, emotional support, and practical support–there are so many functions (in addition to “treatemnt”) that we need to fulfill as part of our health care.
As you know I recently joined the federal government–with the explicit task of furthering consumer engagement via health IT–so I’m looking at everything through a policy lense. My question to you–and others in the e-pateint community–is, what are the policy implications, if any, of your findings? Is there anything governement can or should do to further the kinds of peer to peer sharing that play such a vital role? Most online communities are private-sector/nonprofit driven (and I’m thinking they should be?). Policy can improve access in several ways (access to IT services, access to the traditional medical record, etc–we’re working on it). But as our understanding of people’s health needs growns through reports like this, are there any gaps you see in what governement could be doing? For example, should we be studying online communities aand their impact, or supporting their infrastructure… or is it better for us to stay out of the way and let the private sector work it out?
You picked up on an important point of the survey – to separate some of the elements of health from health care. This has been part of what Pew Internet and the California HealthCare Foundation have been exploring for a few years, but we hadn’t had the chance before to field questions like these, teasing out the choices that people make.
Something else that hasn’t been talked about much: many of the questions were asked of all adults, not just internet users.
ONC is just now focusing on consumer engagement via Health IT 2 years after they passed ARRA? Wow what a missed opportunity to implement patient centered design principals in all of the programs. Even the prior administration was committed to this.
Policy is just one very awkward lever that Government could have used and I wonder why ONC didn’t include patients and / or consumer advocates as a requirement of all of the programs they funded in the last 2 years?
Government is the largest purchaser of health care services in the US and it would be a simple contract change to simply require basic options like real time access to EHR’s for patients.
The gaps and areas where you could focus will be on ensuring patient privacy and security. Most of the millions of women who are strong advocates for “choice” for example might not want that procedure disclosed to all of their health care providers forever.
The private online communities also often use a business model that isn’t clear to participants(RealAge is a classic example) and many people are concerned that some of the largest growing EHR”s are “free” to providers but are funded by pharma.. There is a role for govt to equalize the power imbalance in places like that by requiring disclosure.
Patient engagement isn’t an after thought or a luxury it a core value that should cut across all programs and be lead by people who have real world experience in both healthcare and IT as well as organizational change and grass roots engagement vs policy experts or physicians.
The private sector has gotten to this point and it isn’t an either or answer but a hydbird of public and private working for the benefit of the patients. (since it is their tax dollars paying for it all)
CA EHR Guy –
Thanks for your thoughts. I agree with you that ONC should have had more of a consumer focus earlier on. To be fair, however, it has for a while had a Chief Privacy Officer who is doing a great deal to strengthen privacy protections, and ONC more broadly has made some good efforts to engage consumer groups and address their priorities, especially in recent months.
You make some good points about general pro-consumer activities ONC could/should engage in, and though I’d love to hear people’s thoughts about that topic in general, this probably isn’t the right thread.
What I was wondering (and perhaps not clearly enough articulating) is whether there are any implications of this particular study for policymakers. Is there anything new that we’ve learned about health needs, behavior, or online communities that should be reflected in ONC’s activities—or those of our colleagues in other parts of the government?
sharing experiences in a medical online community should now be considered part of standard medical care, particularly for unusual, rare or complex conditions.
No NIH institute is currently properly equipped to both assess and promote this patient activity. ONC could easily become the leader within the administration for developing first a research program that would finally help provide some desperat;y needed scientific validation for the real and varied benefits of these communities, as well as the perceived risks.
The pioneering work of Barbara Rimer and her team at UNC School of public health showed us that this kind of research is far from trivial and requires a new mindset from ALL those involved, on the science team and on the advocates side as well. We need help, and we need it coming from federal agencies. I have said so for 13 years and I believe this is even more important today than it was 13 years ago. Now that communities have morphed into significant data collection entities and may very well be one the true major proponents of PHR implementation and use, it would seem obvious that ONC should be involved.
Since some of us theorize, based solely in our long term experience, that informed and engaged patients are better patients, use less of the health care system resources and are better equipped to fight overprescription and fraud, any research that would look into this theory could have profound policy repercussions. I strongly believe so!
For those not familiar with Barbara Rimer’s work, please see her bio page at UNC:
Please also read:
“How Cancer Survivors Provide Support on Cancer-Related Internet Mailing Lists,” by Andrea Meier, PhD; Elizabeth J Lyons, MPH; Gilles Frydman; Michael Forlenza, MPH, PhD; Barbara K Rimer, DrPH. (Journal of Medical Internet Research: Vol. 9, No. 2). Available at: http://www.jmir.org/2007/2/e12/
(I cited the above study in Peer-to-peer Healthcare in this section:
On the question of research and patient involvement, the traditional paradigm looks like another one about to be completely remade. The new regime for Comparative Effectiveness Research (CER) among other things is attempting to make research far more relevant to decision makers: physicians, policy makers and patients/consumers.
The $1 billion CER program has set up a Patient Centered Outcomes Research Institute (PCORI) that is ostensibly designed to create ways to involve individuals in research…in practical terms, that would suggest using the existing paths that lead directly to patient online communities.
I attended a conference last November, “Transforming Oncology through Comparative Effectiveness Research,” the first half-day of which was devoted to “Engaging Patients in CER.”* Speakers from the breast cancer advocacy community included Susan Love, who was provocative and challenging. Each of the advocates agreed with her point that, “The public is not invested in CER.” To address this, Love’s foundation has created a “social research” platform, the “Army of Women,” that has registered more than 350,000 and looks like an excellent model.
The paradigm of social research, she said, is based on “bringing the public in at the beginning,” which is surely not the usual order for establishing research participation.
Whether NIH will ever be moved to take up Love’s model or anything like it remains to be seen. And I suspect that pro-active initiatives like the “Army of Women” will form and advance irrespective of what the ONC has in mind.
(* I wrote about the consumer sessions here: http://bit.ly/CER-Onco )
Wow, here’s a quote from Susan Love:
“Dis-intermediate the medical establishment entirely.”
(Captured in Taylor’s post about the consumer sessions, linked above.)
I had the pleasure of hearing a presentation by Naz Sykes, executive director of the Dr. Susan Love Research Foundation, at a meeting of the President’s Cancer Panel in December. Her talk was entitled, “Army of Women: A Paradigm-Changing Research Resource and a New Model for Democratizing Research.” My notes:
That comment of course woke up the audience. She made a very strong case that the current structure has too often delivered flawed, and basically unusable results.
One statistic about Army of Women that stood out is that of the 350,000 registered, the vast majority, about 80% as I recall, are neither survivors nor patients. That suggests a broader potential public interest in research and trials than the patient and caregiver community itself.
Susan Love will be on the panel about the Future of Research at the spring Health 2.0 in San Diego (March 22):
Thanks Susannah, this information is directly applicable to my MA thesis research right now, and I’m happy to have found your talk!
I have to wonder how generalizable these findings are to complementary and alternative health information shared online. When you talk about “healthcare outloud” comprising both both emotional support and shared medical information, does that include information shared for modalities outside of traditional allopathic medicine?
If I have heard these findings correctly, people still prefer diagnoses by medical professionals, perhaps emotional support by peers (including family, friends, and fellow chronic-disease sufferers) and shared information equally from both. Again, does this extend beyond the world of medical intervention to include complementary and alternative medicine modalities such as Traditional Chinese Medicine, Ayurveda, acupuncture, herbal medicine, Chiropractic, yoga, meditation, Naturopathic medicine, aromatherapy, massage therapy, energy healing, mind/body therapies, Native healing etc.
I am about to conduct my research on whether people are more likely to believe in the efficacy of an alternative modality (like the field of Traditional Chinese Medicine that includes acupuncture) when endorsed by a traditional authority, like the CDC/FDA/NIH, or if a more de-centralized peer-to-peer “endorsement” found via social media metrics are equally (or more) effective.
I suppose my two questions are:
1) do your findings extend into the world of CAM modalities?
2) can you see this research as being useful to the field including e-patient, peer-to-peer health, and healthcare outloud information?
We did ask respondents which group is more helpful when they need information about alternative treatments: health professionals like doctors and nurses or peers like fellow patients, friends, and family. 63% of adults choose health professionals over other sources.
Note that this was a question asked of all adults, not just internet users, and we didn’t ask about their mode of communication (online, on the phone, face to face, etc). We wanted to focus this question just on the professional vs. lay source choice.
In a separate question we asked about the “last time” someone needed information, care, or support about a health issue and found that the majority of US adults turned to a health professional and, overwhelmingly, the interactions occurred offline.
The data set will be made available for researchers like you soon — please email me directly if you’re interested: sfox at pewinternet.org
As the founder of the Pediatric Adolescent Gastroesophageal Reflux Association and http://www.reflux.org, I had the honor of being interviewed by Tom Ferguson for his original white paper.
The acceptance of patient to patient communities has improved drastically. Some professional societies even make room at the table for patient groups. This doesn’t happen in gastroenterology, but it does in many areas of medicine. That is a huge improvement.
I liked your comments on hugs PLUS science, replacing hugs VERSUS science. My group has always tried hard to provide a good balance of information, practical strategies and hugs. (We call it support.) Various factors push us one way or another but we work hard at being balanced.
The one thing that has NOT changed since the original report – funding is not available for groups that offer hugs. Some pharmas support such groups but they generally fund projects, not normal activities. Foundations are worse. They generally will not allow disease-specific associations to even apply. When we do, we get form-letters that say “you don’t provide health care.”
I did some work in this space — I ran the company that made the software for this pioneering study of online care. We also did a (better, more advanced) version for diabetes also through Kaiser.
It is important not to generalize about the differences between patient-led and professional-led support groups. Mort Lieberman, a psychiatrist at UCSF, did a really interesting study of patient- and professional-led support groups online in cancer and Parkinson’s. (A bunch of his articles are linked here — check out the titles, great stuff.) What he found was that cancer groups work better when led by a professional and Parkinson’s groups work fine led by a patient, with a lot of psychological and group dynamic insight.
I think that the simple summary is that diseases with a slow, gradual, and predictable course work well with patient support. Diseases with a high standard deviation in outcomes (e.g., fatal for some but not all), can spiral out of control: people who are moving towards the worst outcomes need support the most, but people who are in the group for a long time probably are having the best outcomes.