Interpersonal Dimension of Online Patient Forums: How Patients Manage Informational and Relational Aspects in Response to Posted Questions

Interpersonal Dimension of Online Patient Forums: How Patients Manage Informational and Relational Aspects in Response to Posted Questions

On the HU Admins forum, AussieNeil posted what you see below (as nearly as possible the same).

One of our members brought this paper to my attention which I expect will be of interest, particularly to Thyroid UK!

From Hermes – Journal of Language and Communication in Business no 51-2013

* Antoinette Mary Fage-Butler & Matilde Nisbeth Jensen

Department of Business Communication

School of Business and Social Sciences

Aarhus University

Abstract

"The internet has revolutionised the ways in which patients acquire medical information, a development which has clearly been welcomed by patients: seeking out health information online is now the third most popular activity after internet searches and e-mail (Timimi 2012). However, it has led to concerns about the quality of the information, the ability of lay people to understand it (Gerber/Eiser 2001) as well as potential cyberchondria (Starcevic/Berle 2013). In light of these confl icting perspectives, this paper examines one such source of online information, namely, the patient forum where patients communicate with other patients about a particular medical condition....."

Warning, it's a long paper in PDF format (16 pages + references), but very relevant to us.

download2.hermes.asb.dk/arc...

I've asked our member to pass it on to HU.

Neil

Reposted by Rod

24 Replies

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  • Thanks for posting this. I was amazed and pleased about this paragraph, particularly the bit I've bolded :

    "Not so surprisingly, perhaps, medical professionals have expressed a number of concerns about

    online patient forums. These include disquiet about the biomedical accuracy of the information

    that is offered online on patient forums (Deshpande/Jadad 2009, Lewis 2006) though this is not

    necessarily an issue: a study (Esquivel et al. 2006) found that only 10 of 4600 postings on an un-

    moderated internet cancer support group were false or misleading, and 7 of these false or mislead-

    ing statements were corrected within an average of four hours and 33 minutes, suggesting that pa-

    tients were capable of moderating sites. Another concern has been the likelihood that patient fo-

    rums propagate cyberchondria, hypochondria brought on by an imbalanced, unqualified reading of online biomedical information (Starcevic/Berle 2013, White/Horvitz 2009)."

    I bet the accuracy of 4600 separate GP or hospital appointments discussing cancer would not have anything close to such a high accuracy rate.

    I also find it ironic, from a personal perspective, that they worry about "cyberchondria". I am due to have an appointment with my GP very soon and my GP will be expecting me to go on statins. I intend to refuse point blank, and this is because of the research and reading I've done, mainly online. The subject has come up before (and I've refused), but I'm expecting this next appointment to be a bit more high pressure. Another issue is that I'm of an age where I am invited to get mammograms done regularly. I've had it done twice. I'm intending to turn down future appointments. This is also due to research I've read online.

  • Don't forget that money is the "driver" they get paid for putting patients on statins, doing smear tests, sending you for mammograms and giving you flu jabs! I received an invite for a flu jab because I was in one of the at risk categories, news to me!! I am under 65 and do not suffer from any of the named categories. No doubt have a black mark against me fro not complying. Good luck with your resistance campaign.

  • Thanks. I think my main concern is that I might get chucked out of the practice. But my memory is already total pants, and muscle pain is an almost daily occurrence. I will not risk taking statins, with the possible side effects of damaged memory and damaged muscles, just to please my doctor, when there is no evidence at all of any benefit to women. Also, when looking at all-cause mortality figures for women, the higher the cholesterol the lower the mortality.

  • So what. Accept the statin prescription. Do the pharmacists let the doctor know if it's been filled? How much Big Brotherism is going on over in the UK? I'd just throw it in the paper shredder.

    Or if needs be, fill it and rebottle it, take it to another pharmacy for safe disposal.

    Be subversive. Okay, passive aggressive. Whatever it takes to get the monkey off your back.

  • The main problem with this idea is that I'm a really terrible liar. I look shifty when I tell lies. The other thing is that I would have to have regular blood tests, at least in the beginning, to show whether or not the statins were actually doing what they were supposed to, and of course they wouldn't. So the doctor would be trying to find the statin that would do the trick in lowering my total cholesterol, but she would just be wasting her time. If she ever twigged that I wasn't taking the statins then I think she really would say that our relationship had broken down and I would get kicked out of the practice. I think, all things considered, I would rather just tell the truth, and hope for the best.

    The other problem of course is that, at least for now, I don't pay for doctor appointments and blood tests, so I would feel guilty about wasting money.

  • I don't pay for the doctor or the blood tests, but I'd be paying full price for the pills. No way would I ever take statins. Rather starve myself into semi skeleton first.

    That guy, the Potato Commissioner of Washington state lived on nothing but potatoes for two months. His cholesterol plummeted like a stone! He was perfectly healthy at the end of it all. Just added 1 tablespoon of fat per day to his potatoes. He stopped snoring the day he started the potato diet. Started snoring again when he stopped. He lost a lot of weight too. I guess you could do a 2 week potato hack before your next cholesterol blood test.

  • Please do NOT waste NHS funds by getting prescriptions fulfilled for the product then to be thrown away.

  • and don't throw out vegetables either. Think of all the land that is torn up, the work involved in planting, weeding, harvesting and transporting.

    A huge amount of produce ends up in the garbage.

  • some interesting research which explains why on line forums are successful. I would certainly not know anywhere near as much as I do about my thyroid problems if I hadn't found this website. The support and information I have received have empowered me to resolve, not yet fully, my thyroid health issues. I have learned that I am not mad and that most doctors know very little about thyroid health. I have also been angered by reading how so many unwell people, mainly women, have been so badly let down by the NHS. I am known for my cynicism/realism and if anything these traits have increased! I now question everything that a doctor or health professional might tell me and make sure that I research on line. I know that "a little knowledge can be a dangerous thing" but with help and support from fellow sufferers I think it is relatively easy to find the right solutions. The sense of "community" aided by anonymity is the real strength of forums like this. Thank you to everyone for sharing.

  • Fascinating paper, Rod, thanks for reposting. Very pleased to see that biomedical advice is so accurately shared.

    There was an interesting programme on Tuesday night about patients taking control of their own chronic illness and crowdsearching research bbc.co.uk/programmes/b04grspl

  • Have just listened to that - excellent.

    This is a specific endorsement for:

    Everyone who does not get excellent treatment;

    Everyone who self-medicates at any level (even simply taking slightly more or less from time to time);

    Everyone who has any interest in science and engineering;

    Everyone who has a less than perfect relationship with medical professionals;

    Indeed, everyone here who can access it.

    Repeat of link:

    bbc.co.uk/programmes/b04grspl

    Rod

  • Thanks for the link but had to give up listening due to music in the background! I find that so annoying, perhaps due to difficulty in concentrating. Shall have another go later!

  • Thanks Rod - wonder who is financing this interesting research ? Did it say and I missed it ? Like others I too have increased my knowledge about thyroid and auto-immune issues from this forum - leading to the taking of extra new supplements rather than hard drugs that were prescribed by the medical profession :-)

  • Well the paper came from the university Aarhus in Dansk but, unlike a lot of papers these days, did not have a declaration of interests so far as I could see.

  • Thank you Rod....

  • I have to say, thanks to this forum, one of my friends is now a modern version of Lazarus! Someone posted the B12 video which is absolutely the best of it's kind. I've sent it around to a number of friends who have sent it on to their friends....etc.

    She's also hypo taking T4. I asked her if she had her B12 result: 205! Bottom of range 189. I asked her to take 5,000 mcg methylcobalamin sublingual which she did alone for 60 days (and now I managed to source her a bottle of Carlson Nutra-support Diabetes plus magnesium glycinate and still taking the B12) and the change is nothing short of a miracle! She does not have PA. She could not feel her feet or hands. Albeit she had got Guillain Barre in 2007 but it seems no one has been monitoring her B12 appropriately. She had shots for B12 back in 2007 but they didn't do much. Then on the Carlson product which seemed to help but it became illegal in Canada. So I lost track of what she was or was not taking. I assumed she was taking something but I was wrong.

    For the first time since 2007 she can balance on one foot, go up and down stairs without hanging onto the railing, get up from a chair or sofa without pushing with her arms, can do rapid bunny hops..... and she has ENERGY! She has lost more than 9 pounds in two months just because she feels so good. It's been so very, very long since I've seen her so happy and energetic and active. Her massage therapist told her that her leg muscles were growing back.

    So thanks to this forum there is someone who has their life back after too many years of disability. She doesn't think she'll get back full function because of the nerve damage. But the improvement so far has been jaw dropping. Here's hoping.....

  • Great story - and great for you she was with it enough to take your advice. So rewarding when you see people improve with just the basics our body needs....

    Thank you for sharing....

  • aDoctor, welcome to the forum. I am an old geezer endocrine patient that also lives in the US, NE. One thing you need to understand is that adequate thyroid treatment in the UK is even more of a challenge than it is in the US. As just one example the RCP (Royal College of Physicians) thinks 10 is the magic number on the TSH scale for hypothyroidism. It takes a little time to understand the differences from the US. In the US if you have money for travel or live in one of the more progressive states you have a better chance of escaping the inferior standard of treatment that is so prevalent in allopathic medicine. Allopathic medicine has done, and does do, some wonderful things but chronic conditions and the endocrine world are another story.

    I enjoyed your post above, you make some pertinent points but I had to chuckle over two of your statements.

    "Another way is to incorporate others fund of knowledge. Without education and lots of training, it is very hard to make the distinction between emotional response and the information itself. That is why we train as physicians with experiences and information not afforded in normal life."

    Even with all your training there is still a lot of dogma and crap science in your profession along with a fair amount of corruption from the pharmaceutical industry. Medical school does not make you an infallible demigod and you exist in a profession which is subject to all the human flaws the rest of us have to own up to. The patriarchal model of medicine is dying a slow death. We are interested in an intelligent partnership which understands the uniqueness of each individual, not one size fits all edicts issued from on high.

    "There is a difference between trained consensus and lay popularity. It is common to use the power of personal experience to persuade others. It doesn't make it correct. But it may make it satisfying."

    In theory this statement is correct, 'trained consensus' should arrive at more knowledgeable and successful outcomes but in reality it has given us the TSH as the Gold Standard for screening and T4 monotherapy as the only treatment modality. The TFTs (Thyroid Function Tests) have severe limitations which most doctors are completely unaware of and T4 monotherapy as the sole treatment denies reality. Both are perfect examples of the fact that even with 'trained consensus' you can still end up with "it doesn't make it correct".

    I hope you will spend some time on the forum and make contributions to the dialogue, it could be a lively conversation. We are also passionate about reintegrating 'intelligent' endocrinology into standard medical care, it has been lacking for far too long, almost 75 years.

    Respectfully, PR

  • Unfortunately doc, professionals are not without their emotional biases. When the whiner patient has been in for the umpteenth time it's difficult, isn't it, to view them as if for the first time?

    Or what about my friend who had Guillain Barre in 2007, was in the ICU for some time and sustained neurological damage. It was touch and go for a while there. But afterwards no one thought to treat her with supraphysiological doses of B12. Sure they took her B12 and it was just above the bottom of range. So after all these years I put her on 5,000 mcg B12 sublinguals and the improvement is like a Lazarus moment. It's not placebo after 60 days. Quite a number of extremely well trained doctors (neurologist, GP, endocrinologist, orthopedic surgeon, head of infectious diseases, respirologist, there may be more but these I know for sure) with all those big eggheads of yours didn't figure it out that this lady needed what she's getting now. It's not like 1 doctor missed it. It's a whole bloody team of doctors missed it. A little bit of humility would go a long way, doc. Get off the high horse and learn something.

    Start with this:

  • Well, say what you like, we wouldn't be here if we got satisfactory treatment from doctors. They've only got themselves to blame!

  • aDoctor, well, it looks as though I'm talking to an allopathic doctor that has retained his capacity for critical thinking, too many doctors seem to lose that trait after medical school or they are too afraid to express it. You will be a welcome addition to the conversation.

    The challenges of Endocrine Disease in the US and UK are comparable from the patient presentation but not from the options available to the patient, we have more options in the US.

    The professional organizations in the US (ATA, AACE, Endocrine Society) are closely aligned with the European organizations (BTA, BTF, RCP, ETA). The ATA and AACE's 2012 Guidelines were reviewed by the European organizations before they were finalized. The only real difference is the ETA holds T3 in experimental status while the ATA et al do not. Tick box medicine does seem to be alive and well on both sides of the pond.

    I have never been able to find any science to support ten as the dividing line on the TSH scale. It appears to be a leftover artifact from the 1st gen TSH tests, some of whom had 10 as the upper limit of their reference range. Although 10 is in the US guidelines it seems to be applied more strongly in the UK.

    I am sorry to hear that you suffer attacks from your colleagues for your treatment standards. I am well aware that doctors have been prosecuted for their views on thyroid treatment here in the US but it seems to have slowed in the last few years. Dr. Jonathon Wright was hauled before the board on trumped up charges just a year ago so I do not believe we have completely turned the corner yet, but they have been trying to get Dr. Wright for years.

    I don't know how aware you are of the alternative world to allopathic medicine but this has been the year of the webinar. The NDs, NMDs, DCs, DOs, Health Coaches, Nutritionists and MDs that have transitioned to Holistic, Integrative, Functional, CAM and Anti-Aging Medicine have been out in force and I think it is too late to put the cat back in the bag. There are millions and millions of Americans that are totally dissatisfied with what allopathic medicine has to offer for chronic conditions and they are supporting the growing alternative to allopathic medicine. All western countries need to change their approach or they will end up bankrupt from health care costs.

    Are you still working within the insurance model? Have you considered changing to a functional or integrative cash practice? Do you practice in a very conservative part of the country? I realize you probably don't care to disclose your location but maybe something like East coast, SE, SW, West coast, Plains states might be OK?

    I am familiar with your links except for the plosone.org article, thanks for that. One thing I have learned is that you cannot absorb the entire catalog of endocrine literature, I have tried and failed. Dr. Lindner made a couple of contributions to the Scottish Thyroid Petition and has been a sane voice for many years.

    Have you read Dr. Holtorf's excellent website?

    nahypothyroidism.org/

    Are you familiar with Dr. Bianco's work?

    deiodinase.org/

    I'm curious how much you have explored.

    A couple of my favorites:

    "The guidelines are not inclusive of all proper approaches or methods, or exclusive of

    others. the guidelines do not establish a standard of care, and specific outcomes are not guaranteed. Treatment decisions must be made based on the independent judgment of health

    care providers and each patient’s individual circumstances. A guideline is not intended to take the place of physician judgment in diagnosing and treatment of particular patients".

    "We encourage medical professionals to use this information in conjunction with their best

    clinical judgment. The presented recommendations may not be appropriate in all situations."

    They do establish a standard of care and doctors are afraid to violate them and use their own clinical judgment and of course in the allopathic model time is a critical constraint.

    As for the TFTs, calling the reference range the normal range is a complete misnomer which implies a degree of accuracy the tests cannot support. They all suffer from a 'low index of individuality' so subjecting patients to a fixed reference range is a joke. Then there are the known problems with the width of the reference ranges and establishing the upper limit. There is the work of Drs. Hoermann, Midgley and Dietrich on the standard model showing it isn't quite as liner as thought. The problem that the TSH can lag the clinical presentation of symptoms by years, notable especially in Hashimoto's. The IFCCs attempt to harmonize the results from the TFTs and the great variance in the FT3 tests. And many more problem areas.

    Until allopathic doctors start treating the patient instead of the blood test and include the patient's signs and symptoms in the diagnosis it will always be an inferior standard. I realize this is hard to do under the insurance model but it must change.

    I think there is growing support for doctors and institutions that practice a 'functional' approach. Not only are millions of patients starting to demand better care but business will be pushing for 'preventive care'. The Safeway experiment will be impossible to ignore, it creates a competitive advantage that others will be forced to adopt. The Cleveland Clinic is going to establish a "Functional Unit' to document results and best practices. Change is coming however painful it will be. PR

    PS Doctors can be just as frustrating to patients as patients can be to doctors. It is very difficult under the insurance/allopathic model to get a doctor to actually listen to you, it is almost impossible to have an intelligent discussion, there simply isn't the time for it. There are always exceptions of course.

  • aDoctor, would you mind expanding on this a little more? PR

    "A problem with using Pituitary TSH to assess Thyroid status is the -log(TSH)=T4 relationship. Most of the guideline people who are lab statisticians, not clinicians are not aware of this issue. And the clinicians are even further from being aware. I know this is confusing, even for those who have taken the math. TSH is more sensitive when TSH is high (thus the >10 use), but in the range 1-2 it is not."

  • aDoctor, This is the paper PR4NOW refers to above thyroiduk.org.uk/tuk/TUK_PD...

  • Brilliant find... Am sure I shall be upsetting my doctors for many years by quoting from this article about the quality of information available!

    G x

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