Digital divide, health records access and online security

Oxford Internet Study 2011 http://oxis.oii.ox.ac.uk/blog/non-users-and-ex-users-looking-lifestage-education-and-income

The 'digital divide' is very real. The Oxford Internet study is conducted every two years and the above chart is from their most recent survey in 2011. Level of income here relates to household income rather than individual outcome. If you live in a household with an income above £40K it is almost guaranteed that you will have online access. If you live in a poor household with an income of less that £12.5K it is most likely that you won't. There are also stark divisions related to age and educational levels described here.

I've just been having an interesting discussion with Amir Hannan, a GP who is a very strong advocate of patient access to their own health records, about how the digital divide means that those who are most likely to have health problems are least likely to be online... bringing us in the direction of a digital 'inverse care law'.

So if you are a GP and are encouraging patients to access their records online what would you say to those who lack the means to be online? Amir said that patients who are not yet online are directed to a course run by the local library which helps to get people online. But what if you can not afford to have your own access at home, should patients be encouraged to access their medical records from public places such as libraries or internet cafes? What are the risks? Or what about using a computer at the house of friends or family?

Of course, it's not only those who don't have their own computers at home who may use other computerss that they do not own themselves. What issues should you be concerned about if accessing your records from a computer that is also shared with your family or from your work place? Or a hotel lobby when on holiday?

A quick search does not reveal guidance about these issues for people in the UK. Here is the log-in page for the EMIS general practice records access. There is no link to information about online security. Contrast this with information which is available from online banking websites on what to look out for when using their services, for example here is a page on online security from Intelligent Finance.

If there are issues around the online security of accessing health records online, then those who don't have their own internet access at home, are more likely to be at risk. Do you have any examples of links to information in easy to understand forms which will help people to understand and address these issues? Or is it not an issue at all?

EDIT: some great guidance from BCS on accessing records http://www.bcs.org/upload/pdf/social-care-records.pdf <- they state if possible not to access from public computers, but if you do to clear browsing history.*** note this guidance is draft and NOT FOR CIRCULATION but I found it through Google ;-) ***

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".
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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.

Patient narrative- leading to transformation

Last week I came across two great papers by Arno Kumagai. He is an associate professor in the department of internal medicine in the University of Michigan. There they have a programme for first and second year medical students, the Family Centred Experience, which is similar to Cardiff''s Family Case Study.



The first paper " A Conceptual Framework for the Use of Illness Narratives in Medical Education" recognises that learning through patient narratives is often marginalised and considered 'soft' in medical school curricula. This was a point that I attempted to make recently.



He introduces a conceptual framenwork, whereby narratives are seen to help contribute to transformative learning. This is a wonderfully powerful idea where " The doctor-patient relationship changes from subject-to-object communication to intersubjective communication and action: the patient is no longer reified as an object to be worked on but an active subject to be worked with."



Unfortunately I read Arno's paper after my post on online narratives, so I emailed him to ask him his opinion.

"Dear Arno,
I just wanted to say how much I enjoyed this paper and the more recent one on patent narratives in diabetes. I wish I had read them before I wrote the following blog post! http://wishfulthinkinginmedicaleducation.blogspot.com/2008/12/patient-narratives-in-medical-education.html
I was wondering if you have any thoughts about how we could incorporate online patients voices into medical education. The world of health 2.0 is getting bigger and possibly better. It means that we can let students have access to many more experiences than in the past... particularly with regards to under-researched topics, or particularly stigmatising conditions.
I am sure you are very busy but if you have time to drop me a line I would be very grateful.
Happy Christmas,
Anne Marie"



He was very kind and replied at length:

"Hi Anne Marie:
Many thanks for your kind note and apologies for my delayed response. With the upcoming holidays, it has been a bit difficult to find time to quietly chew over your thoughtful insights and question. While I completely agree with you that the patient voice needs much more prominence in medical education, I often wonder whether there are limitations to use of on-line resources to introduce this perspective. I truly believe that there is something fundamental and powerful about going to someone's home, getting to know them and listening to their stories of loss and struggle (and triumph). There is something very old and very human about sitting in the physical presence of the storyteller and bearing witness, not only to their oral history, but also to them as individuals--their non-verbal queues, gestures, and emotions. While words are powerful tools (as a former student of comparative literature, I'm acutely aware of this), there is something in personal interaction which, I believe, may enhance perspective-taking and empathy. In addition, the fact that the students get to know a specific individual and his/her family over the course of 1-2 years makes the interactions--and consequences--highly personal, individual, and contextualized within a specific place and time. As a result, their understanding of chronic illness is different than, and complementary to, that they acquire through formal biomedical readings and lectures. I recently published a paper on this specifically in reference to diabetes (attached).
I fully realize, however, that to do this as a required activity is prohibitive for many institutions--I was just discussing this the other day with my associate dean. At Michigan, the program has 340 students (170 per class), 170 volunteer families, 30 small group instructors and 30 small groups. The amount of time and cost this requires is mind-boggling--as well as being a bit of a burn-out (I've been doing this for 6 years and hit a wall of exhaustion last year; fortunately, got a "second wind" and have been going strong since then.
I don't, by ANY means, want to discourage you from pursuing on-line approaches. In fact, one of the volunteers in the FCE with recently diagnosed type 1 diabetes has his own on-line blog, and I've referred many of my patients to it. The address is http://www.diabetesselfmanagement.com/blog/Eric_Lagergren/. Words ARE powerful tools and should be used in the service of the patients and of justice. One thought: since storytelling can take the form of movies/songs/videos, the use of video interviews or monologues may be a great way to give presence to the patients' voice. As a matter of fact, I'm working on a video project right now with a delightful young woman with sickle cell disease with this approach in mind.
Hope that's at least a little helpful. I'd be delighted to continue this conversation. Please feel free to post this to your blog if you wish."



I am very grateful to Arno for taking the time to respond and I agree with him that the level of interaction achieved by actually sitting with a patient in their own space can not be replicated in any other way. This is intrinsic to our Family Case Study and we would not want it to be removed or downgraded in anyway.

But I do think that it may be possible to supplement these very meaningful interactions. In other parts of the course, for example when studying surgery or gynaecology, we could make use of existing patient accounts on the internet to increase the insights of students. When patients talk to each other online they may speak with a candour which they find harder to use with health professionals. These authentic accounts may be a greater assistance to students developing empathy than fictional narratives, no matter how creative or well articulated.

I agree with Arno, that audio and visual accounts could be particularly rich. In the next few years patients more patients may start documenting their illness journeys on YouTube. Of course these patients may not reflect the entire patient population. The digital divide may mean that the stories of empowered patients get much more airplay from students than those of their disadvantaged neighbours. We need to think of ways of redressing the balance, so that our students will be equipped to move forward in partnership with all their patients.