A field guide to The Diagnosis Difference

The Pew Research Center released a report today on people living with chronic conditions: The Diagnosis Difference.

Policy makers, patient advocates, entrepreneurs, investors, clinicians — all health care stakeholders — can use the data to map the current landscape. There are still barren patches, where people remain offline and cut off from the resources and tools. But there are lush valleys, too, where engagement and change is happening.

I see e-patients as the guides to those valleys since unless you are living with chronic conditions — or love someone who is — you don’t see that side of the internet. So here’s my request: provide your evidence. Show what you have learned.

First, a quick summary of the report:

1. 45% of U.S. adults have a chronic condition (For some, that’s a revelation and there is still a considerable distance to go before that reality is widely known. For you, that’s not the news. That’s just proof that we have a sample that matches the CDC’s estimate and you can therefore trust the data.)

2. 72% of adults with chronic conditions have internet access, compared with 89% of U.S. adults who report no conditions. There are digital divide implications to this because having a chronic disease is an independent factor in predicting if someone has access — apart from things like age, income, and educational attainment.

3. Clinicians are central resources. People living with chronic conditions are more likely than other adults to consult a clinician when they need help or after they Google for a diagnosis.

4. Self-tracking is a massive activity, particularly for people living with 2 or more chronic conditions, and this group is more likely to use formal means, not just tracking in their heads as many “well” trackers do. For example, 41% of health trackers who report having one or more chronic conditions use pencil and paper and 14% of this group uses a medical device such as a glucometer.

5. Living with a chronic condition has an independent, significant effect on behaviors that are often described as signs of consumer health engagement, like reading up on drug safety, medical treatments, or delivery-of-care reviews. Internet users living with chronic conditions are more likely than others to read or watch someone else’s commentary or personal experience about health or medical issues online.

I want to stop a moment and give some examples of what that might look like.

And now we come to the category that personally means the most to me since I’ve spent time in rare disease communities: the 16% of U.S. adults who are living with “other conditions,” like rheumatoid arthritis, epilepsy, or fibromyalgia (to name a very few of thousands). They are hardly ever in the mainstream spotlight. They may have awareness days or weeks or months that their communities honor, but you won’t see the National Football League wearing their colors.

The internet is their spotlight. A blog, a hashtag, a YouTube channel, or a Facebook group can be their lifeline. Yes, they consult clinicians like everyone else, but those who are online know that the path to health — for them — is often found in the advice shared by someone like them or the person they are caring for. The feeding tip that will help their baby get the nutrients she needs to grow. The heating-pad tip that will ease their painsomnia.

As I wrote at the top, unless you are living with chronic conditions — or love someone who is — you don’t see that side of the internet. So let’s open up the landscape.

Please post in the comments what you have learned online from a fellow spoonie, from a fellow caregiver, from a fellow traveler along the path to health. What would you tell someone just diagnosed with your condition to do, especially in tapping into the resources available online? When someone asks you, maybe over Thanksgiving, about why you spend time online, what will you say? Post it here. Links to blogs, videos, tweets — all are welcome.

Thank you.

67 thoughts on “A field guide to The Diagnosis Difference

  1. Susannah, as ever, I remain grateful for your fine work in general and especially for reaching out to those of us who are relegated to the category of “other conditions.”

    In my case, it’s fibromylagia, dx’d in 1986 before it was even called that or accepted as a legitimately awful condition (vs. yet another complaint by/of/from neurotic women).

    My best recommendation for those with fibro and similar “hidden” disabilities, read and make everyone else in your life read Christine Miserandino’s piece, The Spoon Theory (http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/) from whence the term “spoonie” is derived. With no modesty whatsoever, I invite people to read “My Fibromyalgia Story,” with the hope it helps others: http://bit.ly/w4M8Yu

    Given the energy sucking nature of fibro, I also recommend that those with it and similar conditions, carefully think through when and how to use social media for support. FWIW, I tend to use the “back channel” (e.g., DM on Twitter, messages via FB) when I do not want to broadcast how crappy I’m feeling.

    While I consider myself an “epatient,” I also know that I run the risk of undermining my ability to land billable work if I spend too much time whimpering in the public stream. And, as a personal (underscore: personal) preference, I sometimes rather be in denial about that!

    • Thank you, Meredith! I hope including fibro in the “other” list wasn’t too obvious a ploy to get you to comment. I’ll do almost anything for wisdom. Much appreciated.

  2. My advice to a person or parent of a child newly diagnosed with Cystic Fibrosis would be:

    “I can only imagine the devastation of getting a diagnosis of CF for your child. Coming to terms with the diagnosis is a process — it is gradual and it unravels in different ways and on different timelines for everyone. Just know that there’s a thriving. loving, supportive and incredibly knowledge online community of people with CF and those who love them. It is made up of people who have been there before as well as those going through it at the same time you are. They are waiting with open arms. Know it and use it if or when you need it. For me, it’s been an absolute lifeline.”

    • Beautiful, Emily. Thank you! “They are waiting with open arms.” Boy, do I see that, and hopefully newcomers to this world do, too.

  3. There is such a vast amount of information out there, and it can be so vitally helpful that you could call it essential. At the same time, a chronic illness has a depth that you won’t fully understand or know at the beginning of your journey. It may be helpful to read the stories of others, or it might be scary and cause you to ignore health information for a while. I know a fairly famous internet personality who refused to accept the “spoonie” label, because she thought that would mean accepting the control her diagnosis would have over her. Years later and she has a different understanding because of her experiences.

    Be kind to yourself. Take information in big bites or small. You may not feel comfortable with something today that you may find old hat in a few years. Things change. Don’t settle for absolutes. Focus on the positives. Find your people; they are out there (especially online).

    • “Be kind with yourself.” So, so important. I once wrote to a friend about getting through a tough medical situation that I’d also been through. High on the list was: Wallow if you need to. Thank you.

      • I just wrote about this…. from my perspective as caregiver, but reflecting another personal family event that is going on: http://drcatherinerose.com/2013/11/04/yourturn/

        For me, CHARGE Syndrome Foundation was lifeline. A family. A support system. A row boat when I needed it.
        For me, ePatient Dave was oxygen. Made me realize that my ‘self-perceived’ bossy-ness, was outright ePatient caregiving. And that to keep someone alive, you have to bring that much passion to the game of life.
        For me, it was about mourning the life I thought I was going to lead and getting ‘surfer’ legs, or ‘snowboarder’ legs (I can do neither) – but setting aside expectations of my life and making lemonade from lemons.

        • Thank you, Catherine! I love that post. “Te Toca a Ti” (It’s your turn) is so much gentler than “Life’s a *itch” (one of its corollaries, as you point out).

        • For those too lazy to click, Catherine’s post is *terrific*. Good, solid, “start here” advice on dealing with your newly changed life – “It’s your turn.”

  4. Re self-tracking…How can we integrate with #EHR and feedback to providers in real time? This seems like the missing link for actionable care.

    • Great question! And thanks for making the leap from Twitter to post it here. If you don’t mind a little homework, I’ll share a few background articles on the perspective I’ve gained:

      From Erin Moore, who tracks her son’s health so carefully that she was able to convince emergency-room clinicians to trust her:

      “Because I had been tracking his health so closely, because they were able to access his previous test results, because I felt empowered enough to speak up and express my perspective and desired course of action, and because I had given them the evidence to trust me, we found a mutually agreed upon solution that saved us two weeks in the hospital.”

      I lived my what-if

      I gave a sneak-preview of today’s report at Health 2.0 in October and asked, if we now know that so many are collecting data, how we can connect it to clinical practice. There was a good discussion on that post if you have time to check it out:

      Data collection and connection

      • The University of Michigan Health System has a great patient portal where once your medical record is updated, the information is available on the portal. I can get graphs on trends in lab/test results, patient billing information, etc.

        It also contains secure messaging with your physician. Even if your physician can’t answer, a Nurse will contact you. This is for non-emergency inquiries of course.

        • Thanks, Tiffani! Can patients or caregivers upload their own data or notes into the record? For example, their home blood pressure readings or patterns of headaches?

          • I just checked and you cannot. I’ll bring that up. I’m on the Patient Family-Centered Care Council for adult medicine. That would be a great addition to the site, patient notes.

    • In case it’s useful to people interested in helping to integrate “kitchen table” tracking data with clinical records: you’ve got MDs on your side.

      In the US:

      New Study Reveals That Physicians Embrace Patient Self-Tracking – Manhattan Research, April 11, 2013.

      Denise Silber (@health20paris) tweeted today:

      “French physician study: 91% think self collected patient data a good thing. Unexpected result.”

      (She said the study is not yet published but was presented at a conference this morning — gotta love Twitter for early warning of intriguing research publications!)

  5. Among the other excellent take-aways, providers and policymakers must make No. 3 their No. 1: “Clinicians are central resources.” If you aren’t as accessible and perceived as trustworthy as “Dr. Google” or the folks seen socially, the other points matter far less.

    Clinician accessibility includes ease of use and timeliness. Don’t tell me I can email my doctor — then a) not get back to me for two days and (just as important) b) maintain a high-reliability system for reaching practitioners after-hours. (Not take-all-calls “advice nurses” with too-shallow knowledge bases.)

    Conversely, don’t assume that because you provide a web portal that I can take advantage of it easily (or even want to.) As in b) above, providers must understand both the digital divide and patient preferences and provide parallel streams for access to providers and to information.

    Another thought for policymakers: Internet providers must offer low- or virtually zero-cost options to increase access. Income and disposable income aren’t the same. If you’re living with a chronic condition, your out-of-pocket health care costs likely are far higher than someone who “looks” the same as you on paper. (Even on Medicaid: transportation to medical appointments costs money.)

    As for what I would advise people just diagnosed to do: first, set priorities, based on your condition and equally important, your personality. Set up a reliable way to reach your provider(s), whether via a patient portal or by phone or (best) both. Understand what information you need from your provider. What do you need from others like you? What don’t you need?

    Make sure you have access to your own data online — accurate visit summaries, test results, dates of procedures, etc. Be extremely careful, however, about sharing the specifics via online bulletin boards/patient communities: My hematocrit is X and my hemoglobin is Y; what does that mean? The answers could range from educated guesses, to the correct one, to outright wild guesses and to actual harm. (“My friend’s brother had the same thing and took avocado oil and he’s fine now.”)

    Another (sorry this is long) takeaway about blogs and bulletin boards and such: A lot of people write online because they not only are ill, but because they are at the far end of the curve. Most people aren’t brittle diabetics, for example. If you are, it’s great to have company, online or off. If you’re just diagnosed with diabetes, reading worst-case scenarios won’t be your best introduction to self-management.

    Thank you, Pew, for the excellent report.

  6. A piece to add, there is always something to add when we are talking about chronic illness… It is the question of identity, besides information, I think one of the most valuable aspects of going online, finding not only information but a voice is what matters tremendously for those with a chronic illness. It is at the core of destigmatization and the re-construction of identity. It may not be a one google search process but one that takes time. One of the things I often tell others is that people online are a bit more patient, understanding, and willing to help than offline, and if they don’t, it is quite easy to move on to another place in the vast online landscape.

  7. Hello Susannah and thanks for including a link to my ‘Heart Sisters’ article on post-heart attack PTSD among those other excellent resources listed here.

    I’d like to echo Carly’s astute comments, especially about the profound depth of chronic illness that is often so under-appreciated in the early days, months and years. And as she warns, stories shared online can be either helpful or scary, depending on the day. I will never forget my own gobsmacked response to the moment I first learned this lesson from other women heart attack survivors who rattled off their cardiac event history as if it were just a routine grocery list, e.g. “…had my first MI in 2006 – two stents; second MI in 2007 – double bypass; bypass graft failed in 2008 . . . ”

    Oh! So, THAT’S what “chronic and progressive” means?!

    Most adults have had at least some experience with acute care medicine, and thus they believe they know what being a patient is like: get sick, get treated, get better, thank your brilliant doctor. That’s acute medicine for you.

    But that’s not chronic illness at all, is it? I spend a total of about half a day per year with my wonderful cardiologist, but that leaves 364.5 other days when I’m left to just live as best I can with relentless day-to-day cardiac issues. And it’s that relentless-ness that other ‘spoonies’ get.

    Finally, here’s another thing I learned about online patient resources and support. The nature and frequency of participation can naturally evolve as the patient’s needs change. Israel’s Dr. Galit Nimrod, for example, describes a number of distinct phases observed in online communities, from “distressed newcomers” to “active support givers” or “moving-on quitters”. More on this at: “Discover. Join. Leave. The Life Cycle Of Online Patient Groups” – http://myheartsisters.org/2013/09/04/lifecycle-of-online-groups/

    • Carolyn: Really appreciate your link to the life cycle of online groups article. Not only does it make sociological sense (one lens through which I view the world) but also personal sense. In addition to reasons I mentioned in my earlier comment, I’ve not gotten involved with online groups because by the time they emerged, I’d already been living with fibromyalgia for decades and totally fed up with so-called treatment so-called options.

      • Yes! Deeply appreciative of Carolyn’s insights here. They remind me of this quote, from “A Letter to Patients with Chronic Disease, by Rob Lamberts.

        He writes:

        “So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.”


    • Ditto-wow on that “life cycle” post! I’ve been hungering for sociologists to weigh in on the genesis and evolution of online groups! Boy, somebody get a grant and study this and turn the knowledge into publicly accessible advice!

      • Sociologists already got those grants, Dave. That life cycle post is the first of a 3-part series all about the evolution of online groups, including what goes on behind the scenes financially. Go back and enjoy the other two . . .

  8. Bravo, bravo, bravo. It will take weeks or months for policy people to digest all the implications of this minutiae!

    Sometimes it drives me nuts that Pew reports don’t say “Here’s what this means.” But that’s interpretation, which is subject to argument. The numbers, though, are the foundation for thought.

    Thank you too for the detailed disease-by-disease charts at the end – 70 pages of appendix! Food for nosey pokers!

    === I haven’t read the whole thing but the smack-in-the-face answer to “Does this matter??” is right at the start, footnote 1 – the JAMA article whose abstract says:

    “The findings from this analysis contradict several common assumptions. .. (3) chronic illnesses account for 84% of costs overall among the entire population, not only of the elderly.” [Emphasis added]]

    Holy crap! 84%!

    If I were trying to fix the medical hemorrhaging, that would drive me (like a Homeland Security war room) to find out everything I could about this problem. (A specific example of the value of the 70 pages of appendix …. did they also publish all the raw data, for others to analyze?)

    As with your previous report on this (2008??), it strikes me as a compelling paradox: to me “the diagnosis difference” is that chronics split into two camps: if they’re online they show higher-than-normal engagement, but they’re LESS likely to be online. It makes me ask, what can we do to get them online?? Or their caregivers??

    (Caveat- the above is without having read the whole thing – I might have some points wrong.)

    • Dave, you are right on track.

      Our previous report on this topic was published in 2010: Chronic disease and the internet. Indeed, we found a similar pattern of independent effects — negative when it came to internet access, positive when it came to engagement (once online). It’s a puzzle, indeed. And, as you say, the Pew Research Center’s role is to ground the discussion in facts, to take the patient’s temperature, as it were, not to give the prescription.

  9. Thank you Susannah for this fascinating report. It’s a great complement to that recent JAMA article ePatient Dave mentions above, on the Anatomy of Healthcare in the US.

    I hope your report spurs the medical establishment to keep increasing our engagement with the Internet and with the social life of health information.

    Thoughts specifically about geriatrics:
    – I’d love to learn more eventually about how many of the chronic disease patients online are coping with multi-morbidity, and whether they are finding enough online resources to help with this.
    – In my experience most chronic disease resources aren’t adapted for older adults, even though often it’s appropriate to modify chronic disease management as people get older, or struggle with additional serious illnesses. (There’s no section on diabetes and aging at Diabetes Mine, for instance, and even sites for caregivers of elders tend to give very “stock” information on diabetes.) But this hopefully will change over the next few years; a clinical resource like UpToDate now has a page on diabetes in older adults, so should be possible to make similar info available in online communities.

    For me, it will also be interesting to see how chronic disease and the social life of health information evolve as the population keeps aging.

    Thanks again for holding up the mirror!

    • Thanks, Leslie!

      Throughout the report we include analysis of 3 groups — people who report no chronic conditions (55% of US adults), those who report one (24% of US adults), and those who report two or more (20% of US adults).

      A table early on in the report shows the distribution of chronic conditions in the population. For example, 43% of US adults age 65 and older say they are living with two or more conditions. Is that the kind of data you’re looking for?

      As for whether they are finding the resources they need, that is beyond the scope of this report, but a great research question for the next one! Keep those ideas coming, everyone. We are setting our agenda for 2014 in the next month here at the Pew Research Center.

      • You know, I did see that this report consistently show results for people with 2+ conditions, so yes, you’re already helping answer my questions!
        What I had in mind while commenting: I’m esp focused on aging patients with several (3-4+) active chronic illnesses going on at once, so was thinking esp of what they find online that acknowledges and helps with that multimorbidity. For these people – and their caregivers -prioritizing and figuring out what to focus on can be a real challenge. (It doesn’t help that various specialists tend to have tunnel vision & recommend optimal care for their disease, regardless of what’s happening to the person overall.) So I’m always hoping to learn more about how people might be getting help online in managing that complexity. I’ve seen dementia communities address it somewhat, because so many affected people are older and also have other chronic conditions.

        In terms of Pew’s future research agenda, I would love to eventually see Pew’s surveys help us better understand what goes on within the 65+ age group. As another commenter pointed out, the Medicare population is already a very diverse group in terms of Internet and technology use. With the population aging, it would be great to learn more about their health and tech habits…could really help us meet their health needs, aging-in-place needs, etc.

        Thxs again for this work!

  10. P.S. Gotta love that cancer now gets classed as a chronic illness. This is good news, people. For all the challenges, etc., approaching cancer (or at least many forms) as a chronic condition will be a game-changer.

    The notion also speaks to the importance of not thinking of the internet/social media as static. As Carolyn noted, we must be sensitive to life cycles for all conditions: Some phases will be acute, some chronic; some high-need, some not so much. And different times demand a variety of tools. If I’m having an acute episode of X, I don’t want to have to mess with multiple menus, the parallel being a phone system.

    As for “geriatrics,” we need to watch the term. My dad, 98, uses an iPad and has for years. He Skypes. My mother-in-law, 86, won’t touch a computer, and even a simple cell phone challenges her. I just visited a friend in a rehab center, 67, recovering from a post-surgical mess: T1 diabetic, lower leg amputee 15 years ago, recent heart bypass — who uses a cell, iPad and who knows what else; he bikes & kayaks. All “geriatric;” all very different.

  11. Susanna,
    Brilliant, as ever. Thanks as always for sharing your wisdom and encouraging conversation.

    When I read your 45% stat, I actually found myself wondering why it wasn’t higher, especially because of the prevalence of mental health conditions. According to NIMH, appx 1 in 4 adults suffer from a mental disorder in a given year. (Here’s the link: http://www.nimh.nih.gov/health/publications/the-numbers-count-mental-disorders-in-america/index.shtml) For those conditions where stigma still exists – unfortunately the case in mental health – online information + community are especially important. But there is not as much research and conversation about this group as there is about those with “physical” conditions.

    This makes me wonder 1) what would your data look like with this additional cohort accounted for? and 2) more generally, what are the habits of this group vis a vis digital?

    Do you have plans to study the attitudes and behavior of this population? Why do you think there’s not more attention given here?

    Welcome anyone’s perspective.

    • Emily, thank you so much. You put your finger on a limitation of our chronic disease questions that I’ve thought about, but have not yet been able to solve. I wonder how many respondents living with mental health issues said yes to the “any other” question. I’d love to hear about any existing research in this area.

      A little Pew Research history: In our first health survey, fielded in August 2000, we asked internet users who had previously been identified as health information seekers if they “have ever looked online for information about a mental health issue like depression or anxiety.”

      Tom Ferguson became an advisor to us after the publication of that survey’s findings and helped us revise the question to be:

      “Have you ever looked online for information about depression, anxiety, stress or mental health issues?”

      By adding “stress” and placing “mental health issues” at the end, the thought was that it would seem less stigmatized.

      The other limitation we had this year was that we cut the series on disability, which includes questions about mental and emotional challenges. For example, in a 2010 survey we found that 11% of American adults who say that, because of a physical, mental, or emotional condition, they have serious difficulty concentrating, remembering, or making decisions. We chose this time to expand the modules on caregiving and tracking.

      Something else to note: the % of US adults who report to us that they have high blood pressure is about 10 points lower than the CDC’s estimate. Our other estimates — and the overall estimate — is in line with theirs and other surveys, but it’s worth considering.

  12. Great stuff!

    Tracking is SO empowering! I’m a strong believer!
    It allows you (the patient) to take part in your recovery, and provides more data for you (and your doctor) to work from when making decisions.
    More data = more insight and therefore, more appropriate treatment.

    My tracking has shown me the power of alternative medicine, and also that sometimes a “flareup” of my illness is just PMS, or withdrawal from a drug after lowering the dose.

    Other symptoms, I have been able to link to food allergies. Since eliminating those foods, I no longer have those symptoms.

    Over the last 20 years since being diagnosed with systemic lupus, my tracking system evolved from chicken scratch in a stack of spiral-bound notebooks to a 20-page Word document (that no MD wants to read, but my acupuncturist found fascinating)- I’m still adding to that document anytime anything significant happens.

    Recently, I created something that’s easier and faster for MDs to read: a “Health and Symptom Tracker.” It’s a grid, and can be reviewed with a glance, rather than reading paragraphs. (I left it in Word form rather than PDF so it can be modified to suit the individual). I offer it for free on my website for others to use (it also includes a list of suggested tracker-type apps for those who are gadget-friendly): http://www.thesingingpatient.com/free_offer/

    I’ve long felt that both patients and their families are the great untapped resource in health care.

  13. When I had a micropreemie, I fell into being a mom of less than 1% of all live births. I had never felt so alone. Once she was well enough to come home, all I had heard were stories of other former micropreemies that “were fine”. Even other preemie parents told “happily ever after” stories. It was a tough pill to swallow because my baby struggles with feeding, motor issues, and sensory issues. I had kept up with everything on Facebook and then tumblr. The night before her first birthday, I decided to start a blog. I learned that I wasn’t alone. My blog has opened up a community of other parents dealing with the same things I am. Additionally, I later found a social community through a non profit that was helpful when our baby was in the NICU. It is not something I would have found on my own in the physical world.

  14. Susannah,
    Thank you for sharing your comments about this report and for the rich data you present. One question re the Health Care Reviews Online table (Part Two) – what examples might constitute online reviews of drugs or medical treatments? There are obvious examples of online ranking/reviews of providers and facilities but this is a little more general. If referring to a recounting of anyone’s experience in a blog post or forum, I would guess that usage is a lot higher than 22%. Are there other sources that collect patient-level data more formally, other than standard biomedical research? I am always interested when my patients tell me they “heard about” specific side effects of drugs online. Knowing if it’s a series of isolated anecdotes vs a more formal data collection would be very interesting to me as a clinician.

    • One of the challenges of working with survey data is that the questions have to be written so that a general audience can understand them, but specific enough to be useful. Here’s a PDF of the full questionnaire so you can see for yourself how we asked that series.

      Bottom line: we don’t know exactly what sites or services respondents had in mind.

      Have you asked your patients where they’ve gone online or what methods they use to find information? This report shows that while most searches still begin at a general search site, internet users living with chronic disease are more likely than others to go to a specific health website — and many named .gov sites or other trusted names.

  15. My friend Perry Cohen PhD has Parkinson’s. He’s smart, he’s scientifically astute, and he’s been living with the disease for many years. Here’s an offline – but very social – project he’s engaged with.

    Perry’s part of the Parkinson’s Creative Collective, a bunch of patients who conceived, wrote, produced and published the extraordinary new book The Peripatetic Pursuit of Parkinson Disease. He says: “Scientists know plenty about the disease, but they don’t know what it’s like to live with it.”

    A major issue with any chronic condition – for the patient and for the burden on our system – is how to manage living with the disease, so this kind of peer-to-peer advice is vitally useful and valuable. I hope this weekend to write my overdue review of it, and I’ll see if I can ask some of them to come answer your question.

    One of the book’s creators was Paula Wittekind – born my year, and died a year ago this month. This farewell post links to some of the peer-to-peer organizations for that disease.

  16. Susanna et al, this is amazing research and an even more amazing conversation. I think you highlighted an opportunity for information curation by trusted sources within any disease community. I know that many foundations and organizations struggle with directing the folks who view them as a their “trusted source” to information that they haven’t created. Many acknowledge that there is valuable information and knowledge outside of their information, but because of their inability to control the content they hesitate to offer it to people with their name attached. We need to find a way to move these leaders past the fear of what could go wrong to see the opportunity that exists to improve outcomes and save lives

  17. Susannah,
    As always, great research and questions emerging out of it.
    A few comments:
    I think that rare diseases, as you know, have great potential for making connections in the online world since few are even in the same city. For instance, Marfan’s syndrome http://marfmom.com/ .
    Regarding the lower estimate of hypertension by patient report than the CDC, my previous experience with Chronic Kidney Disease patients, anecdotal, was that many did not know that they had it so did not take preventive measures. Were they not told by their doctors, or didn’t remember it? Difficult to say.
    We are early in knowing the effect on medical outcomes – see this recent review article which says as much:
    Health outcomes and related effects of using social media in chronic disease management

    • Thanks, John!

      One of the comments I got during peer review of this report was that exact question: this measure is only of people who can recall that they have these conditions. I believe it’s still valid and useful, but yes, it is probably lower than the real percentage.

      • Perhaps a more engaged patient with access to their EHR would be clearer on what is on their problem list, abnormal lab results and vital signs, like blood pressure. And as a result, these engaged patients would take the initiative to research their condition, not always being dependent on a 15 minute doctors appointment to learn and later recall everything.

    • Thanks, Meredith!

      I once knew a very, very successful fundraiser. When asked her secret, she said, “I believe in the causes I work on. I find it easy to convey their importance to people who can make a difference.” I feel the same way about the research I do, both the method (participatory) and the findings (hey, look at that — also participatory :) Right now, as this movement hatches, and as we have the opportunity to gather online, is a wonderful time to be part of this community, don’t you think?

  18. I was diagnosed with lupus in 2006. At that time, there wasn’t very much awareness. I started off using national lupus organization websites such as the Lupus Foundation of America and SLE Lupus Foundation. I also started looking at blogs such as ButYouDontLookSick.com and ChronicBabe.com.

    From there, I met up with others in my area that have lupus through fundraising walks, etc. The online community now is very strong and there is more awareness as celebrities are “coming out.” Facebook and Twitter are the best ways to stay on top of various lupus communities and blogs. I call lupus the most common rare disease because somebody knows someone with lupus.

    I have a Facebook page Taking Pills n’ Paying Bills, where I share personal experience and lupus-related healthcare news. I’m also in the process of starting a chronic illness health advocacy group called Chronic Wellness Advocates on Facebook as well.

    Getting involved takes away the helplessness you feel with lupus’ debilitating symptoms and ability to constrict your social life.

  19. Thanks Susannah! Labels being labels…does it really matter if your condition falls into “chronic”, “emerging” or “terminal”…it’s a condition that requires resources, support, optimal care. What we bring to the table is the BULK of the information…as patients or parents of patients. I can promised you, as a mom at the Children’s Hospital 6 times a month, the tools are still not there. Some of the most common sense opportunities are mHealth in nature, so policy needs to get on it and start clearing the roadway vs setting up roadblocks for this sort of health tracking and information exchange with providers. Thanks as always, for letting me jump on the soapbox. Oh, and thanks to Mr. Sharp for raising the rare disease point. My son Jack has connective tissue disease a derivative of Marfan Syndrome (I know MarfMom well!!) and our daughter Eve has congenital heart disease (facebook.com/1in100) and a brain tumor. Yes, we are healthcare super-users. But we still often feel isolated and alone. Rare is only rare, when it’s not your family. Onward and upward. Annamarie

  20. It is important that there is regulation of medical websites on the network. Not all medical websites are reliable, it is necessary a quality filter for medical websites.The network can help the patient but too may confuse.If the patient consults reputable websites, use correctly medical devices, and when he has an unresolved doubt, consult with a doctor on line, will occur a great revolution in the doctor-patient relationship; being a participatory medicine and a medicine where the physical presence of the doctor will have less importance(Some studies say that up to 80% of consultations, the physical presence of the physician is not required, can be resolved through telemedicine).

    • Good point, Dr. Artero, I like to look for the ‘Health On The Net’ Code (HON) certification on the health sites I visit. Their logo on any website is a content quality designation earned by thousands of sites from 102 countries so far, acknowledging that a qualified site has passed stringent certification criteria from this European-based health care information monitoring non-profit organization.

      • Gently, and with respect to HON, it’s a self-certification badge, a set of principles not enforced by anyone.

        I’m very interested in the issue of information quality — how people can judge which sources to trust — but I’m not convinced that badges or regulation are the answer.

        • I’d already had experience applying for HON code certification when launching websites in my career in health care, so I was already impressed by the approval process. It took me three tries, for example, to earn HON certification for my blog “Heart Sisters”, after a number of very specific recommendations for improvement/qualification had to be met. And the site is now better for it.

          My observation, gently, is that it’s American site owners who often seem dismissive of the value of HON. Perhaps these sites haven’t bothered to apply, or, like my own first two tries, were rejected – but decided not to pursue. My site now undergoes an annual audit by HON.

          It’s not a perfect system, but if you know a better way to assess information quality online meanwhile, please let us know!

          • That’s great that you had a good experience with HON. My perspective comes from looking at it from the users’ side: Do people know what the HON badge or other quality seals signify? Do they turn away from sites that don’t have it?

            A lifetime ago in internet years — in 2002 — Pew Internet fielded a survey which asked people about their health information search strategies, including quality seals. In case it’s useful as a historical marker:

            Evaluating the quality of health information.

            Speaking of being American, it’s our Thanksgiving holiday starting, well, right now, so I may be slower to approve new comments or answer questions for the next few days.

          • I’m not sure whether this is gentle or not, but I consider the HON certification to be of little, if any, value. In fact, it’s been some time since I’ve seen a site using this designation. I honestly thought it went out with web 1.0.

            And powerful work on the report, Susannah. I’ll try to offer some of my own insight over on 33c once I’ve had a chance to think about it. Happy T-day.

  21. I would be interested in tracking differences between how patients with common vs uncommon conditions navigate and utilize these resources. Does rarity lead to more engagement? My first reaction is yes, speaking from experience. I would also be interested in tracking ePatient burnout, as I’m feeling a bit of it myself. The intense community engagement of platforms like Facebook kind of make you constantly remain engaged with a semi-artificial community, and I’ve been finding more and more that I just need to step away from it and live my actual, physical life (and then I feel guilty for doing so, which is an entirely different issue!)

    • I agree with you. When you have an “invisible disease” and you don’t necessarily look sick, it helps to connect with others with the same condition. Even if it’s to reassure yourself that you are not crazy. For example, this fall/winter weather change has gotten the best of me and checking online, I found that others with lupus are struggling as well. I eventually contacted my doctor and she told me that a good portion of her lupus patients are struggling. So it does help to have those connections.

      Epatient burnout. I find that I have to stay away from general online groups without appropriate moderation. I look for “warrior” mindsets; people who acknowledge the struggles of having the disease, but also share ways to overcome through nutrition, meditation, an encouraging word, etc. I’ve found exposing myself to negative energy of any sort for an extended period of time makes me feel worse.

      As a patient, I’m always laughing and looking for something positive to focus on. I truly believe (and my docs have acknowledged it) that it helps me heal after surgeries and stay on the “good” side of my illness (minor symptoms, no emergency situations).

  22. Wow, this is a SERIOUSLY good conversation!!! Kudos to you Susannah for your amazing work! A few comments from a land close to Santa, less than a month from Christmas:

    I am a Swedish engineer-health informatician-PhD student-patient with Parkinson and I research the area of “self care in chronic disease”.

    What would I, being a highly engaged and empowered patient with Parkinson’s disease (PD) tell a newly diagnosed “Parkie”?
    1) Don’t panic, it’s not the end of the world. PD won’t kill you. It WILL make your life difficult though.
    2) I’m sorry, but there are no quick fixes in PD, it’s a lot of hard work, but it’s worth it
    3) Be a “difficult patient”. If you don’t understand what your doctor’s saying; ask, ask and ask again.
    4) Find your peers, people in a similar situation, fellow patients. (Especially if you have Young Onset PD (definition varies, but generally Young Onset means being diagnosed before age 50)). I have learnt SO much more from my fellow patients than I have from healthcare.
    5) Go online! There is so much great information to find. But a word of caution: read with a critical eye, not everything out there is true.
    6) Look up the World Parkinson Congress (www.worldpdcongress.org). It’s the only congress in PD that involves patients on all levels (participants, volunteers, steering committee, program committee, etc). E-patient Dave was one of the most appreciated speakers at the congress taking place in Montreal in October 2013 and we are now looking forward to WPC2016 in Portland, Oregon.

    You can read about my travels to the congress in Montreal on my website: http://www.riggare.se/2013/11/23/travels-with-parky/

    There you can also see my visualisation of a year in my life with PD: 1 hour in neurological healthcare and 8,765 hours in self care:

    Another comment from me is: How does the tracking/chronic disease/online situation look like in other parts of the world?

    • Thanks for piping up, Sara!

      I want to spotlight something that was true for myself, when I got advice like that from my patients: That advice doesn’t exist on any medical website or in any peer reviewed literature.

        • Sara, that’s no surprise, actually – the paradigm is that miracles and great recoveries in the last century have come from people with great education and credentials. That still happens, but our point is that these days it’s incomplete as a model of *all* value.

          This is the core of why my appeal is not “Who needs doctors?” it’s “Let patients help.”

        • Not that this is a study for Pew to undertake, but I’m wondering if there are any studies of doctors’ views on online health information. Would be interesting to see how this changes over next 5 years.

          I just took a quick look online via google scholar and pubmed and didn’t see anything…anyone know of anything?
          I did find a Mashable story on the topic from 2012, but it’s not exactly high-quality survey data.

          Would be nice to learn more about doctors and what’s driving their responses…we all have our hypotheses of course but that’s why we need mirrors…to reflect some objective information.

  23. Susannah, a small question: I couldn’t find in your survey questionnaire if responses were quantified. For example, Person A who has looked for “health or medical issues online” on just one occasion answers YES to a “have you ever?” question. The same question also gets a YES from Person B who goes online every day, possibly several times a day to look up health or medical issues. Is that significant difference captured in the survey results?

    • No, the intensity of someone’s interest in a topic is not recorded by this survey. It’s something I’m interested in pursuing in future work. The family caregivers report also had this limitation — our definition of who is a caregiver could encompass someone who stops by once a week as well as someone who is with the caree 24×7.

      I’ve seen some excellent qualitative research on this topic. For example, the CHESS program out of U of Wisconsin-Madison fielded a pilot that gave people access to a library of articles related to their condition. Some people took small bites, read 1-2 articles per day. Others were fast out of the gate, reading a lot in the first few days, then tapering off. One person had no activity for nearly the entire pilot and then, in one night, read every single article.

  24. Susannah:

    Thank you for this blog post. I am the proud dad of a 12 year old with Crohn’s disease. When she was diagnosed (a little over 2 years ago) my wife and I left the hospital searching our IPhones for information on what the disease actually was. My wife and I knew little. Furthermore we did not share the news with many people because Crohn’s is a disease of the GI tract and can be a touchy subject. My family felt alone, helpless and hopeless.

    Over the summer I and two other parents decided to change this. The three of us created the ‘Book of Hope’ for parents and patients of Crohn’s Disease and Ulcerative Colitis. We challenged other parents and patients to write the message they would have wanted to hear on the day of diagnosis. The outcome was magical as the words were uplifting messages of hope and inspiration. We printed 10,000 copies for distribution to all centers in the ImproveCareNow network.

    When you receive tragic news the mind has a tendency of dwell on the ‘bad side’ of the statistic. But there are positive outcomes in nearly every situation! Stories of success are not highlighted enough. Just knowing that someone else was in your shoes, walked your walk, and came out the other side can be up lifting.

    The book can be downloaded in PDF version at:

    Thank you for this post, especially at this time of year. There are positive outcomes, there are better endings and there is so much to be thankful for.

    Justin Vandergrift

    • Thank you, Justin. There is so much to be thankful for — and your book is one of those things.

      I like the idea of distributing hard-copy resources through the physical locations of the ImproveCareNow network of treatment centers — meeting all those newly-diagnosed families where they are. Another way, as you point out, of meeting people where they are is to meet them when they search for information — to buy an ad on a search engine results page or otherwise figure out how to get your helpful information to pop up when someone searched for it.

      I’d love to hear about other people’s strategies for finding each other, whether through online or offline networks.

      What other books or print resources are out there? Dave’s link to the (absolutely gorgeous) PD book is one. Siren Interactive’s lovely little book of rare-disease caregiver stories is another: Uncommon Challenges, Shared Journeys.

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