Chronic Disease in Data and Narrative

For the past 5 months I have been immersed in data and narrative about chronic disease. The result, “Chronic Disease and the Internet,” is a report sponsored by the Pew Internet Project and the California HealthCare Foundation. We find that living with a heart condition, lung condition, high blood pressure, diabetes, and/or cancer has an independent, negative effect on someone’s likelihood to have internet access.

The people most in need of the internet’s in-depth information are among the least likely to have access to it.

The report shows that the deck is stacked against people living with chronic disease. They are disproportionately offline. They often have complicated health issues, not easily solved by the addition of even the best, most reliable, medical advice.

And yet, those who are online have a trump card. They have each other. This survey finds that having a chronic disease increases the probability that an internet user will share what they know and learn from their peers. They unearth nuggets of information. They blog. They participate in online discussions. And they just keep going.

Here are some questions and answers about the report:

What do you mean by “independent, negative effect”? Are you saying chronic disease causes people to stay offline?

Phone surveys allow us to paint with a broad brush, but they are limited in what they can tell us about a population. Living with a chronic disease is associated with being offline — we’re not talking about causality. If you look at the raw numbers, it’s obvious that people living with chronic disease are less likely to have internet access (62% go online vs. 81% of adults reporting no chronic conditions). What we did (really, what my fantastic colleague Kristen Purcell did) was run statistical regressions to isolate all the demographic factors. Holding everything constant — education, age, income, etc — chronic disease has an independent effect on someone’s likelihood to go online.

Wait, what?

There are multiple forces at work when we look at internet adoption and use. Having a college education, living in a household with $50K or more in annual income, being under the age of 70, being white, and not being diagnosed with any of the 5 conditions we included in the survey (heart, lung, HBP, diabetes, cancer) are all associated with a greater likelihood of having “traditional” (ie, not wireless) internet access.   You can see that in the “thermometers” I’ve posted and need to update: the vast majority of college grads in the U.S. have internet access.  But it’s not that white people are more likely to have finished college or that college grads are likely to make more money or that the college grad group is younger — holding all those other variables constant, education has a strong, independent effect on someone’s likelihood to have internet access.

By the same token, chronic disease has an effect, but not as strong as education.  Again, it’s not just that the current population of people living with chronic disease are older, are more likely to be black, or are more likely to live in lower-income households — holding all other variables constant, having one of the 5 chronic conditions named in the survey has an independent effect on someone’s likelihood to have internet access.

Thanks, now I’m depressed. Any good news for people who think the internet can help people?

If someone who is older, less-educated, and living with multiple chronic diseases does manage to break free of those anchors and get online, they are just as likely as everyone else to take advantage of online health resources. Once someone is online, having a chronic disease seems to have a buoying effect on their online health exploration and utilization.

I’m a big fan of metaphor and simile to get my points across — what’s the image that resonates with you? Anchors & buoys? Magnets of varying strengths, pulling in different directions? A hot-air balloon, adjusting to wind and gravitational pull? Please add your ideas in the comments.

Why did you include quotes from patients?

Pew Internet recognizes that we often need to supplement our quantitative analysis with qualitative data to fill out the portrait of a group or activity. My colleague Amanda Lenhart has the challenge of tracking teen use of the internet, for example, and does a beautiful job of incorporating focus group quotes in her reports. I’ve used quotes in previous reports about health, such as my 2007 report “E-patients With a Disability or Chronic Disease” and my 2003 report, “Internet Health Resources.” I have been deeply moved by the stories told by patients and caregivers in each of the qualitative surveys we have conducted. My best insights about the social impact of the internet come from reading these narratives.

Gilles Frydman and I have been talking about the power of narrative in connecting patients with health advice. I’d love to hear what other people think about the power of data and the power of narrative. Of course we don’t have to choose, necessarily, but I think the field of participatory medicine needs to recognize the difference between the two approaches. Which one can scale? Which one is most helpful for this or that condition?  Someone with a life-changing diagnosis has different information needs that someone with an ongoing chronic condition, for example.  Which one reaches this or that individual?  Which one leaves this other individual cold?

That’s enough for now — please read the report (OK, at least read the summary) and tell me what you think.


Posted in: patient networks | understanding statistics





75 Responses to “Chronic Disease in Data and Narrative”

  1. Thank You Susannah& Kristen for a really great job! (I am not fond of superlatives, but it applies here)

    I would strongly advise people to read the full report after they read the summary. I believe some of the graphs and tables in the report will become instant classics because they speak stronger than anything else we have seen so far. For example, the one on page 11, the demographics of chronic disease, explains in a heartbeat, by opposition to the data presented why ACOR is successful and remains basically out of reach to the poor and uneducated, while it is free and open to the public. SAD!

    And then the instantly famous “Those who are online have a trump card. They have each other”. A poetic way to express the incredible power of the networked patients, IMO the main cause of the vast transformation of the concept of medicine that is happening right in front of our eyes.

  2. Susannah, I am really not surprised to hear that fewer people with a chronic disease are online compared with people without a chronic disease. Living with a chronic condition can be a real timesuck/moneysuck. Even someone with a good income and health insurance, wrestling with a chronic condition, can be hit with unexpected bills (hospitalizations, medication, doctors’ visits) that make budgets uncomfortably tighter. Some things have to give.

    Someone with a lower income and perhaps no health insurance? It’s logical to see that they’ll be far less likely to get access online. Websites and health information may be free, but computers and Internet service providers are not.

    Also, from the friends and loved ones I know, people with chronic conditions spend a lot of hours just dealing with that condition.

    • Susannah Fox says:

      Thanks so much, Christiane. The charts in the “Internet access” section of the report are pretty stark. Look not only at the basic access column, but the data for broadband, wireless, and just owning a cell phone:

      As I say in the beginning of this video (a clip from an Institute of Medicine panel last October) there are information haves and information have-nots – and the gulf is not getting any narrower:

  3. First, I agree, a terrific report – valuable information, adding new knowledge to our view of what people are doing about their health and what people are doing online. Gilles is right about what’s going on before our eyes.

    I really don’t get this disconnect: I want to know where’s the chicken and where’s the egg? Are they two effects from a common cause??

    Could Kristen run the same numbers, excluding high blood pressure? That’s such a different condition from the others – none of the others can be totally managed by taking a cheap pill once a day, right? My mild hypertension doesn’t change my life at all, as the others do, so I’m itching to know

    • Kristen Purcell says:

      Great point. The five conditions we looked at do have some important distinctions, and we are working on five separate mini-reports that isolate each of the five conditions and talk just about how that population uses the internet.

      The tricky part in all of this is that many of our respondents have more than one of the conditions we asked about. For example, about half of those with high blood pressure in our sample also had one of the other four conditions (particularly diabetes and/or heart disease). So most are managing multiple chronic conditions. If we take out the half who *only* deal with high blood pressure, we might see some movement, but I wouldn’t expect a lot. But we’ll take a look and see!

      • To be clear, Kristen, I was suggesting that you just ignore the hypertension data entirely. So, HBP+1 becomes 1, HBP+2 becomes 2, HBP+0 disappears.

        It’s just that HBP itself has so little impact on life (unless it’s really bad) that it seems not to resemble the others in impact on life and need for interacting with peers online.

  4. First, I agree, a terrific report – valuable information, adding new knowledge to our view of what people are doing about their health and what people are doing online. Gilles is right about what’s going on before our eyes.

    And yes, people should read the whole thing. It’s well written, clear, not some ponderous tome.

    I really don’t get this disconnect – that people with these diseases are also less likely to be online: I want to know where’s the chicken and where’s the egg? Or are they two effects from a common cause??

    Some burning questions beg for further research:

    Is there a correlation with psychology – attitudes and outlooks on life? That’s not Pew’s domain, but it sure would be good for someone to study.

    Then, next: when someone does get online, does their condition improve? (Compare before/after data.) If so, getting online should become prescribable! (Then, if condition improves, see if attitudes/outlooks change.)

    Could Kristen run the same numbers, excluding high blood pressure? That’s such a different condition from the others – none of the others can be totally managed by taking a cheap pill once a day, right? My mild hypertension doesn’t change my life at all, as the others do, so I’m itching to know if it has a different pattern.

    For that matter I’d love to see splits for each of the conditions.

    • Susannah Fox says:

      Yes, yes, and yes.

      Psychological factors, learning styles, literacy levels – the list could go on and each one is important. To begin, the Center for Studying Health System Change has looked at “patient activation”: Cancer patients are the most activated; those with depression are the least. See:

      Before/after research: I agree that this is what is needed – and is going on all over the world in mostly small-sample studies. What we need is a journal to bring it all together :) Seriously, I would love for someone to write a definitive review article (and if someone has, to send it to me).

      HBP: This was a key point in your peer review comments and I agree, we need to run the numbers. The good news is that we are going to free the data in two weeks – post the whole survey data set online so people don’t have to ask me or Kristen to run that query. Caveat: You need to have the right software (SPSS) and know-how. Meantime, we are writing condition-specific reports that will answer some of your questions.

  5. MsGreene says:

    Another powerhouse report from @susannahfox Chronic Disease in Data and Narrative

  6. Chris Hass says:

    One vital factor to consider when interpreting the data may be the usability and accessibility of “Internet use.” There are amazing and life-changing services and information sources available online, but if they aren’t efficient, effective, satisfying to use, or accessible to persons using assistive technologies- particularly when one is in chronic discomfort- then people are less likely to avail themselves of them.

    It’s the responsibility of those developing great online tools, social media connectors, and information repositories to ensure that use and access are as straightforward as possible.

    As an example of the possibilities and challenges of doing so: In 1999 I was involved with a project where a major metropolitan hospital offered online chat rooms to persons with chronic pain- and the results were phenomenal. An individual could log on late in the evening (long after other support services were closed for the day) and chat with someone else who was also up, suffering. Even something as simple as being able to know they weren’t alone in their struggle reduced anxiety and improved their health outcomes – not to mention the benefits of the suggestions, tips, and topical information they were able to share. However, many of the participants had hand- or vision- related conditions that made typing and computer use difficult.

    Maximizing the benefit they received and minimizing the amount of effort they had to exert within the confines of what could be done online was a constant concern, but well worth the effort. We streamlined pages, reduced required clicks, enabled automatic login, ensured that assistive browsing technologies could navigate the site, and let participants create their own macros and emoticons for quickly sharing a mood or reaction with minimal effort.

    Participants’ ability to share data and their unique stories with limited institutional moderation seemed to make the promise and possibilities of the Internet tangible.

    As you consider what promotes Internet use: the usability and accessibility of online offerings are vital but less talked-about aspects of creating successful online experiences.

    • Susannah Fox says:

      Thanks, Chris!

      Chronic pain is an excellent example of a condition that wasn’t named in our screening question for the “people with chronic disease” category but emerged in both the quantitative data and the stories shared in the qual surveys as quite important to respondents (see:

      And I completely agree on the usability/accessibility point. Yesterday as I was preparing for the release of this report I listened to an interview with Stacy Robison of on health literacy and web usability. It’s worth a listen, even if it’s review:

  7. Jane Lincoln says:

    This report is very helpful for those of us trying to reach this exact population. What these data bring to my mind is the need to reach out to the caregivers of folks with chronic illness who are likely to be younger (adult children) and more likely to be online even if they are also of lower income.

    Thank you for this important contribution.

  8. Alexandra Albin says:

    So, what makes chronic disease such a significant influencer? Is it the type of disease?

    I want to expand on EPD’s point about different diseases. Is there data on demographics and each disease category as related to internet use for help. Also, the diseases represented in the survey are the big ones, but what about others…(arthritis, Chronic Pain, etc….) for instance MS populations will be different than Diabetic ones.

    Definitely a mind scratcher. Thanks!

    • Susannah Fox says:

      Alexandra, your comments are right in line with some peer review comments we got – particularly from Brian Loew of and Paul Wicks of

      One of the struggles I’ve had with this paper is how to present a picture of the chronic-disease population that is accurate, friendly to a broad audience, and brings forward new insights about the social impact of the internet. The Pew Research Center is primarily a polling organization — we paint by numbers, with big brushes. That’s why we had to focus on those 5 common diseases (well, 4 + cancer).

      I knew last summer that we needed to find a way to tell a different story than the one captured in the phone survey data. That’s why I was so psyched to partner with PLM and feature stories from their user population. There is a HUGE difference between an acute, life-changing diagnosis and the slog of living with COPD, congestive heart failure, diabetes, etc. It’s a topic that absolutely needs to be highlighted and explored. I hope this paper can provide a data hook for new public policy debates about health data rights, new conversations in the dot-com world about tapping into patient/caregiver expertise/experience, etc. I’m going to make it a key element of my remarks at Health 2.0 Paris on April 6.

      • Alexandra Albin says:

        Trust me, I have learned the hard way that going from a single hit of a medical instance and recovering to sliding into a long term chronic problem that will never go away and is debilitating is quite a different experience. To some of the points folks have made above — sometimes you simply get burned out, don’t have the time and energy to reach out. But, in the end, for those of us that are proactive we still reach out and shout out. Chronic disease sucks! And, as noted in your report it can galvanize one to do things like engage, reach out, research, blog online that you never expected to do. In the end you can have some really nice surprises and outcomes that you did not expect. It is like a strange little gift wrapped in a corporeal blanket (at least sometimes — actually — mostly I can say that (now)). You have to dig deep and recreate yourself if you are going to survive and make it a transformative experience. More Thanks to you.

  9. SusannahFox says:

    @ChristianeTrue Yes, cost is a barrier – hardware + connection. I'd love your comments on if you have a moment

  10. bev rogers says:

    Susannah, what do you see as the recommended action items resulting from this report? Other than the astute comment above about reaching out to the caregivers.

    Also, recently when I was in Florida, the public libraries were packed with elderly using the free computers there.I realize you have to have transportation and know how to use them, but it would be one resource. How many people with chronic disease do you think want to go online to read about it, but can’t – vs those who, for whatever reason, just haven’t thought about doing it.

    • Susannah Fox says:

      I have been thinking about this question since the moment you posted it. I would really prefer to hear from other people about the action items for now. My primary job is to survey the landscape – someone else should build the roads.

    • Bev’s observation about libraries ties in well with some findings of a major new study of US library use that came out yesterday from the federal Institute of Museum & Library Services, the Bill & Melinda Gates Foundation, and the University of Washington Information School. The “US IMPACT” study reveals that nearly 1/3 of Americans age 14 or older (77 million people) used a library computer or wireless network to access the Internet in the past year. Of those 77 million library computer users, 37% focused on health and wellness issues. Roughly half of those who used library computers to find doctors or healthcare providers followed up with appointments. Among those who researched diet & nutrition issues online at the library, 83% decided to change their diet; among those who searched for exercise & fitness information, 84% decided to change their exercise habits. Nearly 2/3 of library computer users (63%) logged on to help others; 56% reported helping family or friends with health matters.

  11. Another piece of great work….thanks Susannah.

    One area that I think needs emphasis is the role clinicians can have in helping patients with chronic disease manage their condition. Conventional wisdom is that clinicians won’t (or can’t) provide lifestyle and other related counseling. This conclusion is based on the old paradigm of only providing expensive, in-person or on-the-phone, one-on-one counseling that is so common in many practices to today. Emerging internet and cell phone technologies will allow organized medicine to cost-effectively provide patients with the day-to-day support they need to prevent disease and self-manage their conditions, all integrated into the fabric of the practice of medicine. By building on the benefits of a trusted clinical relationship, clinicians will be able to help their patients get better and obtain longer lasting results than approaches disconnected from healthcare. One example of a technology assisted and clinically-linked behavior change intervention is the transformation of the NIH’s Diabetes Prevention Program to the internet (see Using the Internet to Translate an Evidence-Base Lifestyle Intervention into Practice K.M. McTigue,, Telemedicine and s-Health Vol 15, No 9. Pages 851-858). Programs such as this one are allowing clinicians to play an active in a patient’s behavior change activities at a fraction of the cost of traditional personnel intensive interventions.

    In the connected era, effective behavior change interventions have just in time delivery of personalized and up-to-date data and information a person needs to make wise choices. Patients are supported so they can easily and accurately keep track of their performance and use that knowledge to plan and implement new approaches to reaching their goals. They provide tailored messages and experiences that speak to each person, based on their unique characteristics, performance on key behaviors and needs at that moment in time. They help patients link directly to family, friends and colleagues for crucial support, and link to their many healthcare providers to help integrate medical care with everyday life.

    As reimbursement policies provide incentives for improved outcomes in chronic disease, more and more healthcare providers will want to help their patient help themselves become more health. Technology will allow clinicians to provide cost effective and engaging behavior change support to many patients, one person at a time.

    • Dr. Kaufman,

      I would like to underscore your comment about the central role physicians must play – like it or not – in chronic disease management.

      As some of you may be aware, there is an entire industry out there that does nothing but chronic disease management. They contract with health plans and large employers to carve out and manage Asthma, COPD, Heart Disease, Diabetes, etc. They “manage” patients using a variety of web-based and telephone-based RN-led interventions.

      Historically, these programs have generally not been successful at getting more than 20%-30% of eligible patients/members/employees to agree to participate…even though it is free to the patient.

      One of the principal reasons these DM programs have not been more successful is that they do not “include” the patient’s physician in any significant way.

      There’s an important lesson here for anyone wishing to get the “average” (versus the expert patient) patient to do anything…including using e-health.

      • Steve: I couldn’t agree more. While direct to consumer applications (e.g. iPhone apps)get most of the publicity I believe they will only be effective if they are linked to trusted clinicians who can guide patients to sustained behavior change and better health. Neal Kaufman MD MPH

  12. SusannahFox says:

    If you read my tweets today and said, "Wait, what?" Please go to: #chronicdisease

  13. […] voit käydä Susannah’n kanssa keskustelua tutkimuksen annista ja kaikesta muusta aiheeseen liittyvästä. […]

    • Susannah Fox says:

      Wow, I wish I knew what this person is saying about our study!

      I was able to knock down a critique on Denise Silber’s blog today (“cette étude manque de rigueur” = this study lacks rigor = narrowed eyes as I take aim: but what is being said in Dutch, German, Spanish…?

      • Janne says:


        I’m Janne Huovila from Finland, Author of blog Ravitsemusuutiset. “Ravitsemusuutiset” means in english Nutrition news. I have made study “Weight management expertise on the internet” in Finland.

        I tell readers of the blog about study “Chronic Disease and the Internet”. We haven’t research information how Finns who living with chronic condition use internet. So I tell readers of the blog the study’s key points.

        Spesially I was interesting how examinees use sosial media. Also in Finland we have lot of enthusiastic stories and websites about sosial media and health promotion. In Finland 80 % of adults access to the internet and 70 % of those looking for health information.

        • Susannah Fox says:

          You could knock me over with a feather, I’m so surprised to hear that our research is being read & spread in Finland. Thank you very much for explaining Ravitsemusuutiset and providing the interesting data on Finnish internet users!

  14. Claudia Williams says:

    Like others, am really interested in the relationship between chronic disease and being online, and wondering if it held true across different age and income cohorts. Did you do any analysis of that? Is this split particularly acute in older or poorer groups? Some focused qualitative research could help tease this out even more and point to solutions. Is it a problem of access? time? money?

    • Susannah Fox says:

      All of the above, or a combination. Kristen and I were talking today about how all these great questions are going to spur us to complete the analysis for the condition-specific reports, but I should warn you that our data does not hold all the answers. We can point in certain directions, but much more study is needed to get to the root of the issues you raise.

      But keep the comments & questions coming! They are inspiring to read.

  15. Pete says:

    This is very interesting, excellent work. The correlation between low internet access and disease state is important, regardless of causality.

    On the causal front, I wonder if you looked at non-linearity in the factors that might be obviously associated with low access? For example, higher education and higher income have each variously been associated with lower risk of cancer (except breast cancer), heart disease, and other chronic conditions. It could be reasonable to assume that the effect of low income and low education are worse than the sum of low income plus low education; this might be difficult to test as the two metrics are not orthogonal (i.e., low income correlates with low education).

    Also, it would be really interesting to see if longevity correlates with internet access; do people with access to information survive longer than people without? This could be tested in a random sample by looking at the distribution of times since diagnosis in those with and without access (and controlling for other variables). Of course, this isn’t a large effect because if it were, it would result in more not fewer people who report internet access and chronic illness. Longevity with disease is, according to a recent Penn study, something that the USA excels at, and it would be interesting to see what factors contribute to it.

    Neal: Kaiser Permanente’s eCare program did a great job of connecting lifestyle issues (as you mention) with disease state using software tools in patients with major depressive and bipolar disorders from 2003-2007. (I worked on this project.)

    One possible way to validate the specific association between disease and internet access would be to look specifically at diseases that are uncorrelated with income or education; genetic disorders might be one such opportunity — look for ones that are not correlated with cognition. Cystic fibrosis, a genetic condition, might offer an opportunity as CFF is a very active organization and might be willing to provide access to a wide array of patients and families to advance this hypothesis.

    • Pete: Would love to hear more about your program (please email me at and if you want to learn about what we do please let me know or go to One program we have was created with faculty from the University of Pittsburgh. It is an online version of the NIH’s Diabetes Prevention Program (called the Virtual Lifestyle Management service) and is for any sedentary overweight adult who needs to lose weight for heatlh. Neal Kaufman MD MPH

  16. Interesting report. An initial review leaves me with lots of questions. I’d be real curious to see a cross tabs of:

    1) Respondent rating of perceived health status by respondents with and without internet access by # chronic conditions.

    2) Respondent rating of perceived quality of life by respondents with and without internet access by # chronic conditions.

    How do we know that people/patients without internet access aren’t satisfied with things the way they are? Please don’t everyone start throwing things….

    Steve Wilkins

    • Susannah Fox says:

      Great questions, Steve! That last one resonates since I do not advocate for any outcome in my research and I do not even advocate for people to go online in my personal life. If someone is happy getting medical advice from their doctor and/or a book, who am I to tell them to go online? However, if someone is not satisfied, if they do want to research their condition, I’m very happy to let them know they are not alone (and that I’ve got data to prove it).

  17. Lee Rainie says:

    .@SusannahFox gives the back story on her new report about e-health Very nice e-patient voices

  18. Sylvia Chou says:

    Thanks for starting this insightful conversation. I particularly appreciate the point raised about the power of narrative–often in the form personal illness stories–to creat a community, offer support, and provider health-related information. It would be interesting to consider the different effects of “data” vs. “narrative” in communication around health, and I agree with Susannah’s point on the need for more rigorous qualiative perspective in order to document what individuals are actually doing and how they are utilizing the internet/social media for various purposes. In short, with growing internet penetration across the population, including those suffering from chronic illneses, new opportunities for increased support can serve patients who would otherwise suffer great isolation, provided that Internet access is available.

  19. Amy Romano says:

    RT @SusannahFox: Just as I'd hoped, the comments on my #chronicdisease post are as intriguing as our data:

  20. High quality comments continue, discussing @SusannahFox @KristenPurcell report on chronic disease

  21. SusannahFox says:

    Just as I'd hoped, the comments on my #chronicdisease post are as intriguing as our data:

  22. RT @SusannahFox: Just as I'd hoped, the comments on my #chronicdisease post are as intriguing as our data:

  23. Susannah & Kristen,

    I find it interesting that no one has mentioned the (very) important difference between people suffering from a single chronic disease and those suffering from co-morbidities. It is not mentioned in your report as well and I wonder if you would consider adding this question when you prepare the next questionnaire.

    I would not be surprised if you find major differences between the 2 sub-populations. It ay fit some of the earlier remarks by Dave asking to set aside HBP, because it seems that, for many, and unlike most of the other chronic conditions, hypertension or pre-hypertension is not accompanied by other multiple co-morbidities.

    We know that most treatment algorithms for chronic diseases are reductionists. These reductionist disease management models are not working and one may wonder if people are not facing their limitations when they visit most internet resources. What do you both think?

    • Susannah Fox says:


      I am traveling today so excuse the short reply via Blackberry, but take a second look at the report – most (all?) Of our charts include 3 columns – those who report none of the 5 conditions, those who report 1 or more, and those who report 2+ conditions.

      My first draft focused much more on the 2+ group bc I was, like you, so interested to find out the differences betw them and everyone else. They provide a dramatic contrast, for sure.

      But Kristen and I took that analysis and expanded it together, hopefully not losing the 2+ group in telling the broader story!

      I love these questions bc it shows we have fodder for future elucidations. We could have written a 100-page report, nailing down every point but decided a) it wouldn’t appear until August and b) nobody would read it.

      • Susannah Fox says:

        Also, this is another great example of why Pew Internet supports open research practices: when we post the full data set you can see for yourself the differences between the groups: the “no conditions,” the “only 1,” the “at least 1,” and the “2+ conditions.”

  24. Susannah and Kristen,
    Thanks for this insightful research. While its focus in on how adults with chronic conditions use the internet to gather health information, and secondarily as a communications tool, it opens the door to deeper research/insight on how this group uses the internet for patient-centered support. Although on-line communities such as PatientsLikeMe provide an excellent forum for condition-specific information sharing, personal blogs and free services such as provide a more personal environment for sharing information and receiving emotional support. This important, often therapeutic benefit is often untapped by e-patients that are simply unaware that this type of resource exits. As referenced on pg. 24 of your report, research by the NCI indicates that the internet is most often the top choice of newly diagnosed cancer patients for information gathering. I would be interested to know where this group (and all chronic illness patients) turns to for emotional support. I expect that personal communities created on-line by patients and their caregivers falls far down the list. Perhaps your follow-up research on family caregivers will touch on this subject.

    • Susannah Fox says:

      Thanks, Mike!

      Extra points for citing the exact page number of that NCI reference :) As I typed in those 28 footnotes (yeah, I know, my job is all glamour) I tweeted that footnotes = thank you notes. I meant that I am grateful for all the work that’s gone before, that we all build on and rely on – the HINTS survey is an excellent example.

      I once had a wonderful literature review about caregivers but I am afraid it is out of date. Kristen & I will dig for some new citations, esp. related to emotional support, but we’d also love to hear from other readers and researchers – if you know of any studies, even small-scale, please let us know.

    • Mike,

      This is an interesting addition to Susannah’s report, one I hadn’t thought of: people who aren’t online can’t create a *social* support network, in addition to the issue of disease-peer networks.

      Say hi to Sami and everyone at CaringBridge – I used the daylights out of the system three years ago, and cite it in all my talks.

    • Mike,

      if you read the 3rd chapter of the e-patients White Paper (wiki version here), entitled “Patient-Centered Networks: Connected Communities of Care”, you’ll see that those of us who helped Tom Ferguson talked about these individual-centered ad-hoc communities about 10 years ago.

      As Tom wrote:

      “Searching the World Wide Web for medical information represents only one aspect of the e-patient experience. For many e-patients, online interactions with their own personal networks of family members, friends and other contacts may be equally or more important.

      To get a sense of your own personal online network, you need look no farther than your own e-mail inbox and outbox. According to a classification system proposed by Haythornthwaite, those with whom you communicate weekly or more often are defined as your closest ties; your weekly to monthly contacts are your significant ties; and those with whom you communicate monthly or less frequently are your extended ties. In addition, you may sometimes correspond on a one-time or short-term basis with friends of friends, or others you have “met” online (a weak tie link).

      I think you are asking a very complex question, which may require quite a lot of research in the next few years. I don’t believe that cancer patients differentiate as clearly as you seem to do the informative vs the emotional support. In fact, I believe that the combination of deep information provided in a supportive environment like the ACOR communities is what make our magic sauce work so well.

      I have been studying Edward Bruner’s work on “Experience and Its Expressions” and it may help put the narrative component of medicine in its right place. Bruner provides an explanation for how people understand experience. He suggests that two modes of cognitive functioning order experience, the paradigmatic and the narrative modes of thought, and suggests that they function differently and provide different outcomes.

      Groups like the successful communities on ACOR are able to mix transparently the 2 types of thoughts and it seems that the transition from one mode to another is completely natural for most of the patients and caregivers that inhabitate these communities. It is my fervent hope that we will be able to work with people like Rita Charon (at Columbia U. Dept of Narrative Medicine) in the near future to figure the importance of the narratives in online communities and to study the mechanisms developed by the best communities to switch from one mode to the other.

      • Actually, Gilles, as someone who’s used both ACOR and CaringBridge, I’m pretty sure that the white paper (particularly chapter 3) doesn’t at all discuss the this kind of patient communities in chapter 3.

        Mike may correct me, but CaringBridge is pretty much for an individual person’s social support community. My family, friends, and eventually even my high school classmates showed up. Its function was not for me to access medical information (as I did on ACOR, and as described in chapter 3), but to lighten the communication burden.

        Now that I think of it, it’d be good to have an addition to the white paper wiki about exactly that. But, I don’t think it’s a major addition (e.g. not a separate chapter), because although it’s a way that e-patients use the internet, it’s not transformational about the doctor-patient relationship as the rest of the WP is.

        • Actually Dave, 2 short comments:

          1. You should reread chapter 3! It talks about the Patient-Centered Support Networks in Serious Illness that are completely different from the disease specific online communities. It mentions carepages, the equivalent of caringbridge. Chapter 4 is the chapter about communities like ACOR. I should know. I was assigned the task of finishing Chapter 4 after Tom passed away!

          2. The e-patients White Paper was always interested in the new roles of patients and never specifically interested in doctor-patient relationship. In fact, in all of our conversations, we talked about the autonomous patient. It was all about the patient. The way it should be.

  25. @sevinfo @blueeyepath Here's @SusannahFox original post on the chronic disease report

  26. I was rather surprised to read My. Frydman’s comments about the role of physicians in Participatory Medicine. I quote “in all of our conversations, we talked about the autonomous patient. It was all about the patient. The way it should be.”

    I think you need to change the name of your group from “participatory” to “exclusionary.” You might also want to hang a sign on the door of the clubhouse saying “no physicians or patients that see value in working with physicians” allowed.

    At least you are more transparent as a group than “big pharma” when it comes to exposing your bias.

    As an e-patient, a care giver for a 6-year survivor of Stage 4 Lung Cancer, and big supporter of patient-centered care, I can safely say that any patient that treats himself/herself for a serious medical condition has a fool for a doctor.

    • Steve,

      Valid point. Like you I’m a Stage 4 cancer-beater, and my thoughts on this are in the two-minute video that’s currently at the top of this blog: “When I got my diagnosis, was I going to come up with the high-dosage Interleukin that saved my life? No – this is about a new kind of partnership.”

      Gilles has always been our most radical voice – though he might disagree, of course :-). I won’t speak for him (I’m sure he will), but this group certainly is about participatory medicine. Many of the smiling faces at the top of this blog are MDs and other doctors – and good friends of Gilles.

      We recently refined the definition of participatory medicine on the Society’s page: “Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

      Note that it says drivers of their health, not their health care. This is consistent with Stanley Feld MD’s magnificent metaphor Physicians are coaches, patients are players. My primary doctor, Danny Sands, and I further explored this in our recent post “Why aren’t you harder on me?”

      Thanks for participating.

    • Susannah Fox says:


      I wanted to add my voice to this thread to say this is *not* a clubhouse but a forum for open discussion and debate. Otherwise I wouldn’t be part of it.

      I’ve just started to get to know you through your comments here and your work on your own excellent blog ( but I sincerely hope that you’ll continue to be part of this conversation. We need new ideas, new voices, new perspectives to broaden our understanding of what is really happening.

    • Steve, I am afraid you misunderstood my comment to Dave that was just in response to his insistance that PM is only related to the doctor-patient relationship, which is clearly not representative of the current definition of PM.

      As Dave so diplomatically said, I may be the most vocal proponent of patient-driven changes in the medical care system. But it needs to be said, I’m nothing compared to what Tom was at the end of his life, when he was looking for more and more activities being transferred to the patient and patient communities over time. I do not want in any way to deny the critical importance of doctors. I only want to add, not remove.

      As the husband of someone who experienced multiple life-threatening acute and chronic medical events I would be the last one to lower the importance of great doctors who rely on exceptional expertise to make the difference between life and death. But similarly, as a husband of someone who was diagnosed with cancer I would never expect any doctor to know more than a small amount about the long term experience of cancer patients. To each one their own expertise and their own importance. That’s why the model of participatory medicine creates better care. Because, as we say in the white paper, health professionals can’t do it alone!

      What we set to do with the white paper was entirely different from engaging in a long conversation about the doctor-patient relationship. We had a simple job assigned to us. We were to journal what e-patients were doing on- and off-line, since nobody had done a serious cataloging before. That’s why I said it was all about the patient. Nothing in the white paper, is in any way taking away what good doctors do.

      As for the Society for Participatory Medicine, it can only be embracing anyone who accept the paradigm shift that has been taking place for a generation. The health care system can only change if all those involved equally participate in the necessary transformation of the medical model.

      If I have not fully answered and you need further precisions, don’t hesitate!

    • Steve,

      my earlier comment may not have been sufficient to explain where we are. So, you can find more about a patient-centric definition of Participatory Medicine in our latest post here

      • Thank you all for your help in putting Gilles’ comments in perspective. I think I have a better understanding of where the group is coming from.

        I used to blog about cancer survivorship but gave it up because it brought back too many painful memories of how the health care system let my wife down in the beginning. This conversation is bringing it all back. I believed then and still do that there is a tremendous amount of bad information floating around – online and off. I learned first hand that with some diseases you only get one chance “to get it right” and very little time to waste getting everyone’s opinion. There are no “do overs” with lung cancer and other conditions as well. If I had listened to the conventional wisdom of family, friends or the “group-think” of support groups my wife would be dead. Having counseled other cancer patients over the years,I too often see patients fall victim to the paralysis of “group think” and die.

        Enough of this for now…

  27. Brian Laing says:

    Thanks for the excellent report. One question:

    The report alludes to patients who “track their own health metrics,” but the Internet activities you mention seem limited to communication and information-seeking. Did you find evidence for patient use of the disease self-management tools that are making their way online?

    • Susannah Fox says:

      Thanks for the close read of the report! You’re referring to a line on p. 25 which is footnoted to point to Thomas Goetz’s book, The Decision Tree. Our survey did not include specific questions about those disease self-management tools, so this was my way of alluding to the possibility that this population might be warming up to their use.

      You can download a PDF of the questionnaire from the Pew Internet site if you want to see what we *did* ask about:

      • Brian Laing says:

        Thanks for your reply. It would be nice to see research evidence that patients are indeed warming to such tools, as they are more expensive to develop and implement, compared to information resources.

    • One study that looked at self-management support online was recently published in Telemedicine and e-Health — Vol 15. No. 9 page 851-858 November 2009 Using the Internet to Translate an Evidence-Based Lifestyle Intervention into Practice.. you can click here to a link to the PDF of the article on our website ( Full disclosure…I am CEO of the technology company that powers the intervention and we are licensed to distribute it to healthcare providers ( Neal Kaufman MD, MPH

  28. I’ve just been digging into this report, and it’s deeper and more nuanced than I realized. Good stuff. I’ll have more on this tonight.

  29. SusannahFox says:

    @RayGoldberg Thanks! Would love to hear what you think of the findings.

  30. […] understands this: they’ve released all the raw survey data for Susannah Fox’s new study of chronic disease so others can split and crunch however they like. And open data is a hallmark of the Open Science […]

  31. […] understands this: they’ve released all the raw survey data for Susannah Fox’s new study of chronic disease so others can split and crunch however they like. And open data is a hallmark of the Open Science […]

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  33. […] However, once someone does have internet access, chronic disease has an independent, positive effect on an internet user’s likelihood to use social media for health: to blog, to contribute to online health discussion, to access hospital reviews, doctor reviews, and podcasts. (For more on this topic, please see Chronic Disease in Data and Narrative.) […]

  34. Surina says:

    I must say “wow,” as I am indeed disabled with a litany of chronic illnesses all, at this point, secondary to Intractable Pain. I find myself jealous of your education and your ability to find help for chronic illnesses on-line, in addition to being in a position to wonder what the factors might be that contribute to those with chronic diseases remaining off line.

    At my current pain level, the concise and pithy allude me and yet there is so much I want to say. I know conversation has moved on, but I do wish my years of brief (by necessity), albeit daily, stints of internet research had resulted in some kind of real treatment, improvement or resources. I do know how frustrating it was, when I could not pay my access fees, to find things I wanted to follow up on, but could not without access.

    Most days, sitting up is impossible. I have lost my 40’s to this merciless crap, and yet still receive the same cavalier, dismissive treatment and buck passing from my supposed “top physicians,” regardless of weather I am barely able to speak, or loaded down with research (primarily from Medical Journals).

    Any ideas? Suggestions?

    Mine is not the greatest condition for the Google searches. And how I wish just ONE of my doctors would be willing to consider my research or give me an e-mail address so they could see I didn’t make it up myself. You’re all wonderful, and I’m grateful for you and your work beyond the telling of it.

    And now I’ll end my lame, discursive, prattle :) BTW, my computer is so old, upgrades and add-ons are no longer available. That’s SSI for ya!

    • Surina, you haven’t told us anything about your condition or where you’re located.

      • Surina says:

        Right you are! Thank you for responding. Again, the brain doesn’t work the way I’d like it to at this pain level. RE: My condition; As I’ve been told frequently, by many doctors, my condition is complicated. For the sake of brevity, my chronic pain initially presented in 1998, as “Chronic Pelvic Pain,”requiring hospitalization. I have been primarily bedridden since. The CPP dx, quickly transmogrified into a litany of conditions, resulting in Intractable Pain (an actual DX alone), and the complications therein. My Marfan’s is now resulting in frequent dislocations, for example, as things atrophy while I wait for adequate pain relief to begin the Physical Therapy I so desperately need. Among the origins of my chronic pain (now, I.P.), are the popular Fibromyalgia, CFS, severe inflammation issues, Cervical Distonia, Early onset osteoporosis & Myofascial Pain. The hit parade of conditions, symptoms and I.P. complications includes spine degeneration, joint and muscle pain, migraines, Siatica, high blood pressure/tachycardia (cardiac-adrenal syndrome in IP pts. w/dangerous spikes in pain flares)… As my condition deteriorates, I become more affected by loss of memory/concentration, fatigue, muscle wasting and atrophy, depression, immune impairment and so on. In the past year, I’ve dealt with such newcomers as dramatic tooth loss and decay, and equally dramatic, but sudden weight gain of 50 lbs. in one month. Did I mention my insomnia? I sleep about every other night. I didn’t sleep last night, so that’s not helping. Sorry! I’m beating my head against a brick wall, trying to get help for the weight gain which only adds to my depression and the feelings of hopelessness I fight, alternative and/or complimentary modalities. I can’t even get psyche care beyond medication. And, if I hadn’t used my name already, I’d tell you why that’s more than a tad shocking.
        My computer is plotzing in slo-mo, so I’ll be back. I know of no doctors who have treated I.P in San Francisco or nearby. Thank you!

        • Surina, you may want to look into the American Pain Foundation’s online community, PainAid, at … There you will find both discussion boards and scheduled live online chats, not only with people living with chronic/acute pain and their caregivers, but also with healthcare professionals who are experts in the field. You may be able to find leads and suggestions from others about finding the care you need in your area. Best wishes.

  35. Surina says:

    Thank you so much. I know about the site, but haven’t been there in years. It sounds like they’ve added a great deal. As I recall (and my pain is quite bad today and thus, so is recall), they charged a fee back then. Again, I could be wrong. Thank you!

  36. […] However, once someone does have internet access, chronic disease has an independent, positive effect on an internet user’s likelihood to use social media for health: to blog, to contribute to online health discussion, to access hospital reviews, doctor reviews, and podcasts. (For more on this topic, please see Chronic Disease in Data and Narrative.) […]

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