Online Patient Groups

Laura Landro’s column in the Wall Street Journal features a series of profiles of online patient groups like and, among others.

Now seems like the right time to post some data that I’ve been holding back, waiting for the right opportunity to talk about it publicly.

In August 2006, we conducted an RDD survey which included the question:

“Do you ever use the internet to participate in an online discussion, a listserv, or other online group forum that helps people with personal issues or health problems?”

12% of internet users say yes.

I think the key word is “participate” since it implies that you post as well as read/lurk. That number rings true to me since it is right in line with the other content creation/social media activities we track – just 8% of internet users keep a blog, whereas 39% of internet users read blogs, for example.

In the past we asked a broader question and got a much bigger number:

“Do you ever use the internet to go to a website that provides info or support for a specific medical condition or personal situation?”

58% of internet users said yes in November 2004.

Again, question wording is key. In this older question we asked about whether someone visited a site, not if they participated in the discussion, which opens it up to the giant lurker population. Also, I wonder if it made a difference that the last phrase the respondent heard was “personal situation” (whereas the 2006 version ended on “health problems”). There are multitudes of sites that cater to all the personal situations one might be facing, many of which have nothing whatsoever to do with health & health care. I updated the wording for the August 2006 survey because I wanted to capture the truest picture I could of the core e-patient population – those who are actively sharing their knowledge and contributing to the online world, not just surfing through it.


Posted in: patient networks





10 Responses to “Online Patient Groups”

  1. Very interesting. In our legal minded society, wording means everything!

  2. Kurt says:

    As a medical device specialist who works with surgeons on innovative, minimally invasive devices, I use the internet to share and give back to the community. I like the viewpoint that we are all patients at one point or other in our life. Therefore we are the healthcare system and the internet is our tool to provide better care.


  3. Judith Feder says:

    I really “get” the importance of wording. I actually did a survey of one of the patient groups I’m a member of — I didn’t have academia in mind when I did the survey, just trying to discover and confirm insights I was having, having been a long-timer member. I dared to ask a question about attitudes toward pharma company information, not because I have any axe to grind, but because I wanted to know how my peers felt about having the pharma companies play any role in their community. I developed the findings into a paper, working with Bret Shaw of CHESS, but ran into a lot of resistance from academic reviewers who suspect me of being a shill for big pharma! Heck, I’m just a metastatic breast cancer patient trying to stay alive! In the case of, as of 2006, there were about 700 signed on users, of whom 275 might be considered active (measured by whether they had posted since the beginning of the year). As this is a public web site, there may be many more lurkers who haven’t signed on, but those are the stats they have.

  4. Gilles Frydman says:

    I have seen the research that Judith Feder conducted and once again I am amazed at the resistance she faced, although I know it’s true.

    It has taken 12 years to get the world at large to see ACOR transformed from a site “no one will ever use” (sic) in September 1995 to an entity fast becoming a powerhouse of online research.

    Along the way I have heard every possible variation of the negative comments issued by those who feel threatened by a disruptive innovation.

    But I have also seen profound changes taking place over the last year. As today’s article in the Wall Street Journal demonstrates the importance of e-Patients should now be considered a simple fact.

  5. Dan Hoch says:

    To supplemwnt several of the observations noted above, when John Lester and I looked at the Braintalk forums, we usually found 10 unique IP address “lurkers” for every 1 registered user. I have long suspected that the ratio of readers to activist posters is pretty constnat at somewhere between 5:1 and 10:1.

  6. Gilles Frydman says:

    We have noticed for over 10 years a fairly constant percentage of lurkers at about 85%. Unfortunately there is not yet enough research done on the therapeutic value of lurking. We must assume that lurkers benefit from their silent participation since the phenomenon is internet-wide.

  7. Susannah et al.

    I am a lurker – and have absolutely benefitted.
    My lurking often simply sparks a different way of looking at a situation.
    I don’t feel I have alot to contribute – excpt perhaps to say ‘thanks. that was a help’

    Another reason I lurk is because of what I do ‘for a living’ – which is to identify gaps in patient education (especially as relates to acknowledgement of the emotional impact of a diagnosis) and develop video-based tools to help fill that gap(these videos are seen by hospitalized patients and their families)
    I wonder what thoughts are on one of the gaps I consistently find: the language of health — and I wonder if, for those with lower literacy, the (print-based) internet seems overwhelming and defeatest

    if anyone wants to check a couple of videos out, and lemme know what you think, I’d be forever greatful:, quick link on home page to ‘video demo’

  8. Susannah Fox says:

    Thanks, Kathy, for coming out of the “lurker” mode to post a comment!

    Education is (I think) the strongest factor in predicting whether someone uses the internet. We have seen it in our general population surveys and in our special survey of Latino adults. For Latinos, English proficiency was a strong & independent factor, too, leading us to believe that the still mostly text-based internet (and English language computer software packages here in the U.S.) discourages people with low English literacy skills from going online.

    Another group that is traditionally offline is people age 70+. For that group, “old media” like TV and doctor visits are comfortable, affordable, and they say gives them the info they need.

  9. Thelma says:

    This blog is very informative yet it is combined of opinions of those who have formed these sites for those with medical problems to converge and communicate with each other. Yet these very same sites have such rules and conditions that many are prevented from giving their views for fear of reprisals from moderators who for the most part are members there as well.

    So where do you believe there is honesty enough to formulate the opinions you are giving.

    I am a member of 2 such sites and while one is in a state of decline ‘Braintalk’ the other site ‘Neurotalk’ is trying to creat a site of honesty and interest for all.

    But it too is being hindered by the use of moderators.

    Where is the freedom you need to look at these sites and see what the advantages are and the disadvantages for that matter as well.

    I know from what I speak as when we initiated the Pluripotent Stem Cell Research through Petitions on line with a letter to the president one of the first to sign was Tom Ferguson. He sent me many letters of help and concern with both of us knowing full well it would not be of any use, that was honesty.

    We had over 20,000 who signed on and a myriad of sites followed from that first petition. This we did on our own and were followed by the management only after the petition was entered.

    So is there a place left now that this could be done. I personally don’t think so.

    So then as you talk about the effects of these sites for patient and their rights just exactly what are you pertaining to as there are no personal rights on any site I know of. All are moderated even when there are not enough members to warrant it.

    I would love an explanation and yes I have been a lurker for awhile here.

    I have not worded this properly but I am hesitant even to put this in.

    Thank you for reading it Thelma

  10. “Kaiser is not a hospital. Its a medical foundation? What the hell does that mean. I have gone there for 8 years, and I’m surprised I’m still alive.”

    Your comment above is the smartest one I have ever seen when comes to Kaiser and the Permanente. If all patients asked themselves, – What is Kaiser? They would inevitably, have a better chance to survive this Teaching Hospital.Please read my article below.

    To ALL Kaiser Permanente Patients: So,… you are paying money to Kaiser Permanente every single month hoping that they will “THRIVE” towards your medical care when you need them. Stop for a second and think! How much do you really know about how Kaiser Permanente gives you your medical care? Here’s how: Kaiser Permanente is a HMO and they are primarily a TEACHING HOSPITAL. That’s right! A teaching hospital that offers the bodies of ALL their patients to any doctor enrolled in their GME Program to use them as they see fit to “learn/practice medicine.” Kaiser Permanente has a program which is funded by 2 federal grants named GME Program. GME stands for GRADUATE MEDICAL EDUCATION. It is under this program that YOU will get your PAID medical care from Kaiser. After they are done practicing in your body, 2 things will invariably happen. 1- If their practice on your body makes you sick, they will lie to you, NEVER telling you the truth and that includes ALL other doctors at Kaiser Permanente. 2- The doctor that practiced on your body without your consent, as you sleep under general anesthetic and with no regards for your life, will get promoted by Kaiser, will get more benefits for himself and his family, a better place in society and of course more money at the end of the month. So… now you are sick, and have an up hill battle to fight. One day you learn that there is a company called ACGME ( Accreditation Council for Graduate Medical Education.) and they are the ones that accredits Kaiser Permanente’s GME Program. You run to your computer and read:“The mission of the ACGME is to improve health care by assessing and advancing the quality of resident physicians’ education through accreditation.”You immediately gather documents and ask them politely,… please, look into my concerns…” I did just that. Will the ACGME take any action against the very program that injured you? Of course not! And… how about the patients that were actually killed, will their families get any answers from the ACGME? Of course not. Kaiser THRIVES. Yes they do! They thrive making money on investments with your monthly payment to them. I leaned the truth behind Kaiser Permanente’s GME Program/patients medical care. We, the patients pay them every month at the same time giving them permission to use your body. I now barely survive after I was severely injured under Kaiser Permanente’s GME PROGRAM. Throughout the past 10 years I dedicate my efforts to, -little by little find out the “secrets” that Kaiser Permanente’s GME Program criminals/doctors left in my body for me to find out on my own. See it for yourself. DON’T EVER FORGET… Teaching Hospital, Your money … GME Program – Graduate Medical education Meanwhile Dr Timothy Wilfred Wild is thriving with Kaiser. These are his own words: “Since April 2004, I have been Chief of Head and Neck Surgery. I would never work for any other health organization. I strongly believe in what Kaiser Permanente stands for and am very proud to be a physician for the health plan as well as a member.” Please, continue reading… THIS IS A CRIMINAL HIS NAME IS DR. TIMOTHY WILFRED WILD. HE IS CHIEF HEAD AND NECK SURGERY FOR KAISER PERMANENTE This intentional crime was committed under Kaiser Permanente’s GME Program and it is so violent and horrific; -it defies belief.
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