Wednesday, 16 December 2009

Doctors should be advocating against patients' digital exclusion, not scare-mongering.

This post in an edited version of my comment on KevinMD's post on "Patients using internet health information without physician guidance".
I’m a doctor. I’m a GP (family doctor) in Wales, UK and I teach medical students. I work in a deprived area and I wish that many more of my patients, rather than less, accessed information that could help them be more healthy. But many of my patients do not have easy access to the internet. This impacts on their health in many ways. One that is less often considered is that digital exclusion leads to reduced income.

Recently there was a post on StoryTellERdoc about “Grim Google”. This related the story of a young, healthy man who presented in ER with bright, red rectal bleeding convinced he had bowel carcinoma because he had googled his symptoms and saw that this was a possibility. The story itself and most of the comments are quite scathing. But is this the appropriate response to this episode?

In the UK we know that despite universal access to healthcare we still have differences in cancer survival rates between areas, with patients in well-off areas living longer. This may partly be due to delay in diagnosis.

With regards to late-stage diagnosis of colorectal cancer, research in 1996 in the US showed that patients living in areas of low socio-economic status (SES) were significantly more likely to be diagnosed at a late stage compared to those living in areas of high SES. You may think that times have changed, but more recent research in Denmark- covering 1996-2004- shows that older, wealthier patients, and younger more highly educated patients are less likely to be diagnosed with rectal cancer at a late stage.

So a simple story that seems to illustrate the fallacy of patients trying to diagnose themselves online, may instead represent the awareness and health behaviours which mean that those with the know-how feel empowered to seek care for what could be life-threatening symptoms.

We should be encouraging more of our patients to access health information, especially those who will find access harder. In fact we should be advocating against digital exclusion because its influence as a cause of health inequalities may increase in coming years.


  1. I want to add two stories to this post. A friend of mine was diagnosed with breast cancer a year ago and had to make a decision about reconstructive surgery very quickly. She went online and got the information she needed.

    My daughter is pregnant with her first child and 1,000's of miles away from friends and family. She has found online information very helpful.

    At the core of both of these stories are doctors who are just too busy to provide this information to patients verbally. Unlike my lengthy maternity appointments, my daughter has 10-15 min. in the office, most of which is spend in examination, not talking.

    Part of the solution is a public health initiative that advertises legitimate sites for medical information.

  2. Hello Deirdre,

    Lovely to hear about your daughter's pregnancy. I hope that all goes well.

    NHS Choices provides a great service in the UK. And most of the time now I find that even a google search will pull up mainly good sources on the first page... the problem is possibly adverts. And after all google's business is advertising.

    I think that everbody involved in public health policy is learnng from what happened with MMR. Maybe something similar will happen again, but to hold this up as a reason not to encourage the public to access online health information is simply nonsense.

    It saddens me everytime a patient says "I know I'm not suppose to look things up, but..." because it is fantastic that they are looking things up!

    Next, I agree that doctors don't have time to provide all the information. But it isn't just doctors. A friend of mine who is pregnant says that neither her midwife nor GP had any materials to give her. So she came home and looked everything up online. But she has a PhD. What about the women who are most at risk of problems in pregnancy- those with low incomes, living in deprived areas. Do they have access to the internet, and do they feel confident to use it if they do?

  3. I think the answer is not to stop patients looking at the Internet but rather educating them about how to critique the info they to know what is a reputable site and what is not...and so on. Maybe what GPs surgeries should be doing is handing out info on how to find credible info on the internet.

    To me, it's a power and control thing - are what our worries more that we don;t want our patients to be more informed than us?

  4. Yep, its all a point of balance. There will ALWAYS be stories like "The doctors didn't know why my child was sick. 2 hours on google saved their life" and on the flip side "The internet says I must have cancer! What do you mean I just need to eat some fruit and fiber once in a while"

    But I do fully agree that having access to information and knowing how to handle and cross check it does improve patients quailty of life and care. Thankfully so doctors are really good with it.

    Friend of mine had gallstones. After the first appointment, consultant handed them leaflet with link to a website of the Upper GI team, which had full details of the operation, surgical videos of it, outcome reports, post op care routines, the lot. She found it really useful. One of the good examples of doctors giving information to patients.

  5. That's a fantastic example! Thanks for sharing. Can you say which trust?

  6. I come here frustrated by our use of twitter to attempt a debate about (I'm not sure really! :)

    Your blog posts tend to support what we agree on - that it is a good thing that people use the Internet to inform themselves.

    So where do we disagree?

    I think it was my insistence that traditionally authoritative sources of information must engage with popular, socially networked and socially regulated information.

    By this I don't mean merely starting a website and working hard to make itself the central source of trusted information again, that would be impossible. I mean spending their time building a distributed presence across the popular channels, as a peer in the social networks. If I was a Health Pro today, I would adopt as many Wikipedia articles as I could, make them featured articles, and link them to Wikibooks on the range of topics I am a professional in. I would then maintain these webpages with up to date links to best and better information and forums as they emerge.

    Finally, I would build credibility in the most popular forums in my community, and work to ensure the best information is made available on them. In my case, YahooAnswers seems to be the most popular at the moment. As well as about 2 or 3 others.

    If I still had the need to establish a large central website, I would simply aggregate the expressions I've distributed, affording me as much time as possible to be where people are already.

  7. Hello Leigh
    I think I should start a new post about this... but in the mean time... :)
    At the moment in the UK we have several big organisations (trusted brands) including the BBC and NHS Choices, and patient organisations like Diabetes UK, providing good information online. Of course cutbacks might mean they can't continue that presence.
    And as far as I am aware- though I'll have to seek out my Pew Internet references- most people find health information through google. So being high on Google counts. Yes, of course individuals will also get info from trusted networks on Facebook and other spaces, just as they would do offline and have always done so.
    I can't think of the last time I came across poor health information online. Maybe it is because I am good at searching, but I just don't find very dodgy information. If I did, and I could, I would try to correct something I knew was wrong.
    But as I say above I think it would be better for me to channel my efforts into encouraging patients online rather than worrying too much about the information they would find when they get there. The internet is not a threat to me, and believe it or not, I rarely hear any of my colleagues complain about it either. I asked 280 medical students last week in a lecture if it was a good idea for patients to look for information online- they all said yes. We're not worried about it because we know that it is a good thing.
    I'm lucky to work in a country where doctors don't have to worry about their brand yet. We're not essentially in competition with each other. We're hopefully all working for the common good. And If I thought that I could add something to Wikipedia health articles I would.
    I wonder if you have a particular example in your head that illustrates your concern about health professionals not being in the spaces you call for them to be in. First of all, I suspect that there are already a fair few there already, and second, if the quality of the information there is OK then I don't think they need to be. I don't believe that the same health information is more valid because it comes from me or another doctor than from a patient community.
    Thank you very much for your tweets and this comment. I am sure it is something I will come back to often.


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