NHS England End of Life Workshops

Posted on December 2, 2013 by carolinacic

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:

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

Posted on November 27, 2013 by carolinacic

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:

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.

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?

Posted on November 22, 2013 by carolinacic

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?

This 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

Posted on October 6, 2013 by carolinacic

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?

Posted on September 19, 2013 by carolinacic

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.

Would you let me die at home, dear?

Posted on September 16, 2013 by carolinacic

The BMJ recently published a Personal View article by William Tosh, an anesthesiologist who shares his experience of looking after his father during his last days of life: Choosing to die at home can be tough on the family. In it, he describes the feelings of guilt that he and his close family felt whilst trying to support the best they could his father’s wishes to die at home. Tosh talks about how he struggled with feelings of guilt and resentment, having his home “invaded” with medical devices and staff. His father received excellent end of life care, however he questions if dying at home was the best option in that particular case. He explains how

feelings of panic […] began to surface: there was now nowhere for the family to escape.

Nikolay Bogdanov Belsky - Ultima voluntad

The Last Will, by Nikolay Bogdanov Belsky

I think Tosh has written a very brave letter, sharing his emotional roller coaster and exposing personal feelings in a sensitive manner. More often that we would like to admit, another physician’s account of experience is much more valued than a lay person’s similar account. In this sense, Tosh’s text is a very powerful one, since it brings to the arena a topic that it is not always easy: when the dying person’s wish to die at home is not completely shared by their relatives.

In the last decade or so, there has been a shift in palliative care, acknowledging that most people prefer to die at home, and hence teams and policy makers have been advocating for it. On the other hand, some literature has highlighted an underlying issue: the dying person’s views may not be the same as their carer’s views. In other words, I may want to die at home, but my family may not be prepared for it. This can bring feelings of personal inadequacy (am I a bad person? Don’t I love my father/mother/husband…?), guilt, isolation (it is not easy to talk about this) and resentment. Tosh’s letter illustrates this very well.

I do realise that I am exposing my own reactions to Tosh’s article, and of course my opinion is biased by my own experience of helping dying people and their relatives in a Mediterranean culture. Nonetheless, I think articles like his are a valuable addition and much needed, because they bring attention to a sensitive topic and encourage us researchers and clinicians to discuss it in the open. There are probably no easy answers: each family is a different world, and each disease is different experience.

What is your view?

Blog about the things you know about, not about the things you think you should be blogging about

Posted on August 13, 2013 by carolinacic

Often, when we think about starting a blog, we feel that we need to come up with something extraordinary, something that will blow the reader’s mind. And with so many brilliant blogs around, it is difficult, if not impossible, to come up with such a wonder. What we don’t realise is that often our own area of expertise is fairly obvious to ourselves, but quite interesting and obscure to others.

Things that are obvious to you might not be obvious to the rest.

An example. I love doing systematic reviews and meta-analyses, and have done quite a few. So, after going through the process of learning how to do them, I feel confident about this particular methodology. And because I feel confident about it, I tend to assume that it is easy for everyone. Wrong.

I am lucky to work with many talented, hard-working people, and they each have their own area/s of expertise. Some of them do not know how to do systematic reviews (I am not talking about literature reviews; I am talking about proper, scientific methodology systematic reviews). So now and then they come and ask me for advise about it, which I am more than happy to provide. After all, I often ask them for advise too. But it took me a while to realise that what seemed obvious to me (for instance, designing a solid and comprehensive search strategy) was not obvious to my colleagues. This made me realise that I knew some stuff, and that I could blog about it. Before that, I felt that I did not have anything interesting to say.

So my advise would be: blog about things you know about, not about things you think you should be blogging about.

My top 10 tips to stay cool during a heatwave

Posted on July 18, 2013 by carolinacic

This post is not the usual entry for this blog, but since it is about public health, I thought I would post it.

Having lived in the UK for many years, and suffered some heat waves in this beautiful country, I find very frustrating the scarcity of public health information available about how to keep safe form the heat every time that there is a heatwave. So I just summarised the “Stay cool” tips that I normally follow. Coming from the city of Barcelona, where the summers are tough, these are the things that I do when it is hot:

Tip 1
Re-schedule your day so that you stay indoors during the hottest hours (that is 12h to 15h, or 12PM to 3PM). Go jogging, grocery shopping, and so on, early or late in the day, and do office work, house chores, etc, in the middle of the day.

Tip 2
Leave all the blinds down when you leave home in the morning, this will keep the sun and hot air out, and your home temperature will keep cooler.

Tip 3
Use a traditional fan. It’s cheap, highly effective, doesn’t need batteries and will last you a lifetime. Also a great conversation starter.

Tip 4
Drink 2 litres (8 glasses) of non-sugary liquids a day: water, ice tea, diet drinks. If you can, just drink water: it’s the healthiest, cheapest option available.

Tip 5
Older people, small children and people with learning disabilities often struggle to communicate or realise they are hot. Keep an eye on them, make sure they drink water and stay in the shade. How can you tell if you or someone near you is having a heat stroke? These are the symptoms and some of the things you can do.

Tip 6
Avoid the sun. Period. Do not sunbathe. Walk/stay in the shade whenever possible. I repeat. Avoid. The. Sun.

Tip 7
Use the cold water tap. Do not wash your hands with hot water. Cold water and soap are enough. For an extra cooling effect, let the water run for a few seconds before you wash your hands.

Tip 8
Wear natural fibres, such as cotton and linen. Lose clothes help keep cooler. Protect your skin: do not walk around without a top.

Tip 9
Sprinkle your wrists, forearms and back of the neck with some cold water. It is surprisingly effective.

Tip 10
Straw hats are a trap. The damaging UV & UVB sun rays go through the tiny holes in the straw. They give you the illusion that you are protected from the sun, but you are not. As a result, you end up staying under the sun for longer, feeling that you are safe. Just use a (natural fibre) fabric hat.

Easing the end of life: Startups that are helping people make the ultimate decision

Posted on June 30, 2013 by carolinacic

Gigaom

The world of technology, particularly medical technology, tends to be consumed with making us superhuman. It wants to enhance our abilities and prolong our lives, if not enable us to live forever. But new innovations give rise to new and tough choices, and a small but growing group of startups sees it as their mission to use technology, not to extend life, but to help people make and document some of the most difficult decisions regarding the end of it.

The story of a patient from her days as a student at the Mount Sinai School of Medicine particularly haunts Azalea Kim, co-founder of the startup TrueNorth. A 60-year-old woman, who had terminal cancer, came to the emergency room one weekend evening in dire condition. Because of a complicated family situation, Kim said, she arrived alone, without any family member to serve as an advocate and describe the…

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eHealthOxford

Research information on eHealth, focusing on patient-centred care, palliative care and end of life issues.