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”.

Advertisements

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.

NHS England End of Life Workshops

Older People Living with Cancer

Several weeks ago Kath Parson blogged about the series of workshops being held around England during the  autumn to engage with the public and professionals on proposals to improve end of life care. These workshops follow on from  the publication of More Care, Less Pathway, the report of the independent review into the Liverpool Care Pathway

I attended the workshop held in Crewe and it was indeed attended by a range of professional, voluntary sector and members of the public who had experience of the Liverpool Care pathway – both good and bad.

The workshop was introduced by Ian Leech  from the People in Partnership Group (Dying Matters). The aim of the workshop was to gather views on the proposals and  ideas on improvements to care in the last days of life. This was done by group discussion with  questions being asked, around the following themes,  to initiate discussion:

View original post 149 more words

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).

Your death, and your information dots on the Web: what will happen to your digital identity after you die?

If you are reading this, chances are that you have some kind digital identity*. How many email addresses do you have? Do you have Facebook and Twitter accounts? Flickr, LinkedIn, MySpace, Spotify…? Do you have your own blog/s, too?

If you have one or more of the above, have you considered what will happen to all this digital information about you when you die? Because, let’s face it, we will all die sooner or later. And if you do nothing about it, the little digital information dots that we leave around the Web will stay there, as long as the Web exists. Who will inherit your digital estate? How would you like them to manage and distribute it?

The EndThis might sound frivolous and irrelevant when one is faced with illness and the end of one’s life. In fact, some studies have reported that an 8% of people are not concerned about this at all. However, the vast majority of Web users have given it some thought, although only a minority (13%) have acted on it. Some people now choose to include this in their will. There are also companies that offer services such as storing all your passwords and relevant data, and passing it on to your loved ones following your instructions. In other words, they offer to manage and distribute your digital estate after you die. Needless to say, there are enormous ethical and practical issues regarding this. For instance: how can you know that the company you chose to do that will actually still be in business when you die? And what happens if the company servers get hacked?

Digital technologies have brought us joy and knowledge, but with this have come some challenges attached. This blog entry has no solutions to offer, but hopefully it will raise awareness and give you a starting point to gently start thinking about your digital legacy.

Think of the value of your digital dots. Consider including this in your will. Talk to your loved ones about it. 

*Please note this post refers only to digital identity on the Web. It does not deal with digital information you may have in your computer/s or other devices.

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.