The NHS Security Vulnerabilities (via Terence Eden)

I really enjoyed reading Terence Eden’s blog entry The Unsecured State Part 3 – 2,000+ NHS Security Vulnerabilities (Disclosed). In it, Terence explains step by step how insecure and patchy Britain’s NHS websites are, and how vulnerable they are to hacker attacks. In these days where there is a lot of talk about care.data and the confidentiality of patient records, I think it is an important read. While sadly not surprising, what Terence reports is still shocking.

I am not a programmer so I have only partially understood the technical aspects of the entry, but still it gives a good idea of how much the NHS digital strategy needs to be improved, and it does confirm a lot of concerns that I already had. If you don’t want to read the blog post, or you find it too difficult to read, I will leave here a couple of quotes:

Many Doctors’ Surgeries in an area will all use the same cheap, private sector contractors to built their site. If there’s a bug in one – that bug is present in hundreds of other sites.

and

I finally heard back from someone senior within the NHS. They explained that the Department of Health has no central control over NHS websites. As a result, sites fall through the cracks as local teams change. Consequently, in many cases there is simply no way to contact the website owners.

Thank you to J Pilbeam  at the University of Oxford, who sent me the link to Terence’s post in the first place.

Social media and the healthcare establishment: a power struggle

You may be already familiar with the controversy that a couple of newspaper articles have generated regarding the tweets of Lisa Adams, a woman who is terminally ill, and who has been openly blogging and tweeting about her journey as a patient diagnosed with an incurable cancer. She is not alone in doing this. Dr Kate Granger is also a young woman diagnosed with a terminal cancer, as well as a doctor. She too has chosen to share her experience online, including very personal feelings and pictures of her ordeal.

One could look at this anecdotes phenomenon from many angles, and indeed most have been covered: ethical, public health, medical, social media, patient engagement… To me, the essence of the debate is a very old one: it all boils down to a power struggle, because

the irruption of the Web 2.0 has fostered a paradigm shift within the healthcare landscape.

Not many years ago, the healthcare system was dominated by what has been called the biomedical model. In this model, doctors* knew best, and patients did not question what they were told. Patients were passive recipients of the medical knowledge. We could represent this model in a very simple diagram:

bimedical model

More recently though, things have changed. The biomedical model is slowly but steadily being replaced by the biopsychosocial model. There are many differences between this model and the traditional, biomedical model. I will only focus on the different doctor-patient interaction. In this model, patients take a proactive role. Instead of being passive, the patient has become an engaged and empowered stakeholder, thus changing the doctor-patient relationship:

biopsychosocial model

In my opinion, the debate about patients’ tweets is a symptom that shows how the establishment struggles with this new paradigm. I think it’s interesting how so many people are scared of social media, because it gives power to the people. Until now, it was just us (doctors, journalists, politicians, scientists…) who told things the way we thought  they were. Our vision of the world was the right one, and “the lay person” listened. But now, with the Web 2.0 (and this includes social media), everyone and anyone can tell things the way they think they are, and our version of the story is no longer the right one. And we are forced to listen.

It is time that the self-appointed experts give some room to the patients, because thanks in part to social media they are going to take the centre stage whether you like it or not. After all, is this not the essence of patient-centred care?

* Just to make this post easier to read, I chose to simplify and use the word “doctor”. Of course I mean the medical establishment, including nurses, psychologists, psychiatrists, physiotherapists and so on. I’m sure you understand what I mean when I say “doctor”.

Twitter and Palliative Care

It is not often that I come across a paper that I find not only interesting, but also useful. And it is even rarer for me to read a scientific paper about social media that tells me something I did not know already. As other fellows geeks will very well know, real news about social media nowadays come almost exclusively from blogs and from Twitter.

palliative-care-social-media-twitter

So I was very pleased to find Craig Nicholson’s brief paper titled Palliative care on Twitter: who to follow to get started. In it, Nicholson suggests a number of Twitter accounts to follow, if you are interested in palliative care. Not only does he list a few of them (such as @kesleeman AKA Dr Katherine Sleeman, @EAPCOnlus AKA the European Association of Palliative Care or @thewpca AKA Worldwide Palliative Care Alliance, among others), but he also describes the account in a short paragraph: who is it, and what will you get from them. 

It is very refreshing to see that despite all the social-media-hating-dinosaurs in the health care world, there is still a minority of e-pioneers getting good publications out there, and this is one of them.

If you are new to Twitter and interested in palliative care, this is the paper you need to read.

Telehealth and eHealth: Ageing well: how can technology help? The RSM Conference 2013

For the last couple of days, I have attended the Annual Conference of the  Royal Society of Medicine’s (RSM) “Telehealth and eHealth 2013 Conference: Ageing well: how can technology help?”, organised by the RSM’s Section on Telehealth & eHealth. Personally, it has been a hugely inspiring conference, because it focused on the three key elements of this thing we call eHealth. I firmly believe that the 3 edges of the triangle of eHealth should be patient-centredness, good use of technology and public health:
RSM logo

  • This conference has been highly patient-centric. I recently attended the Medicine 2.0’13 Conference and was disappointed of how much it was focusing on the business and data-harvesting aspects of eHealth. This is only my perception, which is probably due to the fact that I have always worked, and am passionate about, the public sector. So it was great to really feel how all these outstanding speakers (Mary Baker, Charles Lowe, Baroness Masham of Ilton, Malcolm Fisk or Rabbi Yehuda Pink, amongst others) do genuinely care about the people, about the patients. I was also pleasantly surprised by the humble and realistic talk about care homes by BUPA Care Services Medical Director Andrew Cannon.
  • Needless to say, this conference was very strong on how technology can help older people live healthier lives, by improving their quality of life (QoL). Having worked at the University of Oxford’s PROMs Group for a while, I know well the theoretical and methodological underpinnings of PROMs, so I completely agree that PROMs must be our weapons of choice to measure the impact of eHealth on people’s QoL. Two of my favourite quotes from the last two days are very illustrative of the approach to technology and health care during this conference. During his presentation, Dr M Vernon said that “we can use the technology we already have to improve health care”. I could not agree more: we must keep things as simple and as affordable as possible, if we want eHealth to become really mainstream in health care. My other favourite quote was by Rabbi Y Pink: “technology is God’s gift to humanity to improve our quality of life”. This made an atheist like myself smile, in a good way. It is crucial that relevant people in the community can pass the message in such a clever, easy to understand manner.1wimpolest
  • Last, but not least, I did thoroughly enjoy the focus on public health that this event had. In my humble opinion, there is still a lot (a lot) to be done in terms of public health and eHealth. It was great to learn about relevant initiatives from the European Commission, such as the imminent Green Paper on mHealth. I intend to post about this when it is published in a few weeks.

Finally, I was personally very interested to hear about many existing end of life/palliative care and dementia eHealth projects.

This is my take on this year’s RSM Telehealth and eHealth Conference. I would be very interested to hear your views, either via Twitter or as a comment to this post (below).

The use of social media to recruit participants in cancer care research

My colleague Marta Wanat and are presenting a poster on the Use of social media to recruit participants in cancer care research to the International Psycho-Oncology Society IPOS 2013. For those of you not attending the conference, you can find the PDF of the poster here.
I really enjoyed working on this project, and we would be very happy to hear your views via Twitter:
– Marta:  @marta_wanat
– Carolina: @ehealth_CCC
You can also see below the references for the poster:
1. Department of Health. (2012). National cancer patients’ experience survey programme. 2012/13.
2. Ramo, D. E., & Prochaska, J. J. (2012). Broad Reach and Targeted Recruitment Using Facebook for an Online Survey of Young Adult Substance Use. Journal of Medical Internet Research, 14(1)
3. Reed, E., Simmonds, P., Haviland, J., & Corner, J. (2012). Quality of life and experience of care in women with metastatic breast cancer: a cross-sectional survey. Journal of Pain and Symptom Management, 43(4), 747-758.
4. Steinhauser, K. E., Clipp, E. C., Hays, J. C., Olsen, M., Arnold, R., Christakis, N. A., . . . Tulsky, J. A. (2006). Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research. Palliative Medicine, 20(8), 745-754.

An app a day keeps the doctor away… Does it? Should it?

More and more, we read in the media that an app a day keeps the doctor away. It is a catchy phrase, yes. But I find it unsettling that it is heard so often, because it seems to imply that eHealth is a substitution to traditional medicine. From my point of view, eHealth is not a substitution, but an addition to health services. An addition that will improve health services, empower users and increase knowledge both for patients and health professionals. eHealth is progress, is the natural evolution of health care, but it is not the end of health care.

One way of categorising eHealth interventions is to divide them in:

  • Purely digital interventions: these are web-based health interventions where there is no interaction with the health care professional at all. Everything happens online. An example: the app MyFitnessPal, where people can track their nutritional intake and other variables, and act on their health based on this information.
  • Hybrid interventions: where there is a mixture of digital action and human interaction.  An example: interventions which use augmented reality (AR) combined with traditional cognitive behavioral therapy  (CBT) to treat phobias.

Each have their own advantages and disadvantages, which I will cover in another post. But my point is that eHealth cannot be seen as a separate element from health care, or an alternative. Whether it is purely digital or hybrid, in order to be effective, eHealth must always be embedded within health care services. Furthermore, it will scarcely work if the medical community sees it as a threat.

I can see that “an app a day keeps the doctor away” can be read as a way of empowering patients, and this is good. eHealth responds to a change of paradigm, where people take ownership of their health issues in a way we have never seen before. But it is also a shallow, easily misinterpreted statement. So I think we must be cautious when we use these kinds of statements social media: not everybody is familiar with the field of eHealth, and it may lead to attitudes that could be damaging in the long term, both for users and for professionals.