Information Transforms Medicine For Me: ItsMe2, the “digital me”, the future of health care, Big Big Science and me.

itsme2

My recent musings on visions of future healthcare reminded me of a project I was involved in five years ago. This is a long, involved story, so bear with me.

It began in very early 2010, when I came across a link on a BBC news web page. I have been trying to find the particular BBC story without success; I recall it involving Polish researchers and quantum computing in some way. Anyway, the link lead to the European Commission’s CORDIS portal, and some surfing later I found a page on the Future And Emerging Technologies Flagships project.

FET Flagships are:

 

“ambitious large-scale, science-driven, research initiatives that aim to achieve a visionary goal.
The scientific advance should provide a strong and broad basis for future technological innovation and economic exploitation
in a variety of areas, as well as novel benefits for society.”

The site also mentioned they would have a budget of 100 million euros per year, for ten years.

At the time I had been working on various medical education projects and was coming to the end of my Masters in Medical Education from University of Dundee. I had come to the conclusion that many of the outstanding questions in medical education required a massive, long term, cohort approach. Meaningful work on issues like medical school selection and retention, or the introduction of technology into medical education that truly improved patient outcomes, required long-term studies, rather the short-term surveys and pilots that seemed to dominate the field.

The Flagship call was simply an online form. I used my role with the psychiatry section of RAMI as an institutional cover. At the time, I was a Senior Registrar in St Brigid’s, Ardee, and while I will still quite closely linked with UCD, I had no formal role in any third level institution. I fill out the online form really as a way of getting my own thoughts on the topic together.

I was surprised to get an email, a few days later, inviting me to present at a Flagship workshop in Brussels. At first, I thought this was impossible. Then I realised that it was far from impossible – as it happened the workshop was on my research day. I booked a flight to Brussels and the rest is …. well, not quite history, but nevertheless remains online 

transforming medical education

 

The content of my slides is presented below with some comments after each quote – the headings are those of the Flagship application form:

Idea

TRANSFORM MEDICAL EDUCATION •

ICT in medical teaching – from video‐based Virtual Patient to fully immersive Virtual Clinical Environment

• Long term, multicentre, multidisciplinary assessment of impact of Virtual Clinical Environment on students from pre‐intake to established practice

• assessing every aspect of their acquisition and development of information related to knowledge, skills and attitudes using technology as well as other teaching methods.

This is in some ways the most straightforward part of the story. I was not – and am not – predominantly interested in what technology can do for practice, but what constitutes good practice. I am pro-technology if it helps good practice and good outcomes, and anti-technology if it leads to bad practice and bad outcomes.

Ambition •

2020 – “major societal goal is to live longer in better health, in a secure environment and in prosperous conditions” – ISTAG (ICT Advisory Group), July 2009.

• Developing of plausible, fully interactive, immersive, “presence” ‐laden virtual environments

• Difficulty in assessing behavioural change and positive clinical outcome due to educational interventions – require long term, broad evaluation integrating approaches of social science and humanities

• Applicable to other educational contexts

All very worthy, I’m sure you will agree. The EC Cordis ICT Advisory Group was touted very much as the shaping force of this Flagship idea, so I thought it was good to mention them.

Impact

• Health is now one of the biggest issues affecting competitiveness, ongoing sustainabiltiy, and society overall

• High fiscal cost of medical education

• High fiscal, social and mortality/morbidity cost of medical mistakes and missed health promotion opportunities.

• Importance of medical research – a s well as producing clinicians, producing hypothesis generators and research workers.

• Medical education – training practitioners and researchers. Integrates many disciplines.

• Wider impact on education and training generally

Very much in the motherhood-and-apple-pie camp. I have to say I like the phrase “producing hypothesis generators and research workers.”

Integration

• Medicine is transdisciplinary by nature

• Four proposed strands

—• ICT developing immersive virtual teaching environments & other innovations

—• clinical research into practice outcomes

—• educational – integrating and evaluating ICT and other innovative teaching methods

—• information science /social studies – th e entire process of becoming a doctor in social, anthropological, information ‐management and other contexts

All of this is proof I do not lack for grandiosity (at least in some settings)

Plausibility

• Medicine and medical education are EU Strengths

• Much work already throughout EU on each strand (see next slide)

• Long term approach required to assess clinical outcomes of medical educational innovations

• All students entering the project would be subject, to baseline assessments and follow up of academic performance and clinical performance. Individual institutions will be part of the other strands to differing degrees

• Unified approach relating ICT innovation to educational, clinical and social outcomes

(see next slide) indeed – though this was where things were about to get even more intereste

 

Expected support

• AMEE and other medical educator networks

• Virtual Patient project http://www.virtualpatients.eu

• INMEDEA – virtual clinical environment

• MedBiquitous Europe – technical standards for eLearning

• Focus on clinical outcomes – support of Departments of Health, health insurers • Humanities departments as well as ICT/Medical departments of Universities

Need I say that absolutely none of these stakeholders knew the slightest thing about my Massive Grandiose Plan?

This is what I presented at the workshop in Brussels on January 22nd, 2010. The day featured lots of interesting, and in fairness quite frank, discussion as to whether this whole flagship thing was a good idea or not. CORDIS were upfront that they wanted projects that were man-on-the-moon, Human Genome Project style ones which would grab public attention and media coverage. Someone pointed out that putting a man on the moon was useless, although they wouldn’t sniff at the HGP – someone else immediately pointed out that the moon landings gave the USA a continuing advantage in aerospace technology, while the HGP had yet to yield a single treatment for any illness.

The day also featured one of the most impressive – scratch that, THE most impressive – presentations I have seen, from Henry Markram, then of IBM’s Blue Brain Project . Markram will feature a little further on in our story – suffice it to say that he did not skimp on any of the challenges or philosophical implications of the proposal to simulate the brain in toto.

In any case, the upshot of the Workshop was that no one had come into the room with a big enough idea. I was not at all surprised – after all, I did not expect (except in wilder dreams, perhaps) that funding medical education research was anywhere like as exciting as Neil Armstrong landing on the moon. It was then things got interesting, but also that my own role began to change.

I decided to contact some of the stakeholders I had so blithely included on my slide, particular the European Virtual Patients project. I emailed Terry Poulton and Chara Balasubramaniam of St Georges University of London in semi-apologetic form. One of my worries that I had misread the state of virtual patients badly, and arrogantly, and that my contentions would be laughed out of court.

 

It was flattering to find Terry and Chara seeing this project as a potential opportunity. They also recruited Panagiotis Bamidis , who had been involved in the eLearning standard-setting Meducator Project , and we had a series of fruitful discussions on the phone and via various online meeting platforms. Terry took on the reins of presenting at the next workshop, which was in Barcelona.

At this juncture my own professional situation was asserting itself. I was coming to the end of Higher Specialist Training in Psychiatry. I didn’t have  a job come July 2010. I didn’t have budget to travel to conferences that weren’t specifically training related. I had no real institutional affiliation or position, and nothing much to bring to the table of proposals except a song in my heart and a smile on my face. I emailed various stakeholders in Ireland, and had interesting meetings with Science Foundation Ireland, the National Digital Research Centre, and various other research institutes in Ireland. A billion euro project does tend to attract interest. However, what did I have to offer? Keep in touch was the generally encouraging word. And I was not sure how all this would go down in terms of applying for what were primarily clinical jobs, on a CV that already featured its share of somewhat atypical entries. Perhaps more crucially, I didn’t feel I could take the time out, as I was in the position of needing to get locum work  (this was 2010 – now the power is much more with the locum) in the near future.

 

Things moved apace. Terry found synergies with the Virtual Physiological Human project and Prof Hans Lemke’s Computer Assisted Radiology and Surgery project, both of which had entered proposed FET Flagship ideas. These three arms coalesced into a proposal for a project for a “medical avatar”, a “digital me” that would initially be developed for educational purposes but would gradually become a combination of personal electronic health record and personalised health simulator.

At this point I was in a locum position in Cork. Finally one of my meetings paid off, and Prof George Shorten, the new Dean of the UCC Medical School, was interested in a more tangible way in the project. This involved making me a Visiting Fellow of UCC Medical School. Unfortunately, most of the connections had been made, and I still did not have much specific to “bring to the table.”

Nevertheless the project continued, and that December I found myself in a B& B in Ardee, Co Louth, stranded by the snow, working with a range of random collaborators around Europe on the proposal which became called ItsMe2. A screenshot above shows the first page of the 313-page PDF.  This, from the proposal abstract, gives a flavour of what my medical education project had become:

The ITsMe2 Preparatory Action will meet the most pressing socio-economic challenge of European societies: the sustainability and reform of our health and care systems. It designs a long-term roadmap for a FET-Flagship Initiative that develops radically new, integrative, ICT-facilitated models and solutions for delivering well-being and health services to global citizens. The ICT challenges this poses are far beyond current frontiers in user interfaces, physiological modelling, simulation, computer facilities, data storage, interoperability, educational and training support.

ITsMe2 will realise the most advanced “virtual” entity (or avatar) on Earth, a highly advanced digital representation of every individual that stays with us for life, evolving, ‘learning’, becoming an increasingly personalised description of our anatomy, physiology, emotional and physical-socialenvironment as new data and information becomes available. This requires a novel IT infrastructure to manage and integrate the exploding quantities of data, information, knowledge and wisdom far beyond presently dominating somatic aspects. Health policy experts and business modelling will support transfer towards innovation and exploitation.

Is that too modest a goal? Let’s have another go:

Our aims are the construction of an avatar, a digital representation of each and every individual that stays with us for life, evolving, ‘learning’, becoming an increasingly accurate personalised description of our anatomy, physiology and even emotional make-up as new data and information becomes available to populate these characteristics, and secondly the construction of the new IT infrastructure that will be required to manage and to integrate the exploding quantities of data, information, knowledge and wisdom, to evolve data into wisdom, and to present them to the individual user (citizen, patient, healthcare professional,…) in a manner that is intuitive and usable

I didn’t write this 313 page proposal. I did write a few parts, suggested a few changes, made a few edits. I was one of the people on the 2nd of December working on this as the deadline approached, although really just as a quasi-proof reader. It was a strange experience being in Ardee, collaborating with researchers in Norway and Sheffield and Barcelona

Now I am somewhat allergic to excessive use of the word “revolutionise.” This  may have been a kind of  reaction formation to being associated with the ItsMe2 proposal:

Revolutionise healthcare by extending Evidence-Based Medicine into Explanation-based
Medicine, by deploying these radically innovative technologies into the European industrial and
healthcare system, and assess their efficacies;

– Revolutionise healthcare through Information and Communication Technologies to make possible
a complete digitalisation, a complete integration, and an ubiquitous but secure access to every data,
information, and knowledge relative to the wellness, the prevention, and the healthcare of every citizen
of Europe;

– Revolutionise the vision and the culture of all key stakeholders and of the public opinion on the
role of ICT in wellness, prevention and healthcare, by training and re-training the medical
professionals, and by orienting the policy makers and the public opinion.

– Revolutionise the business model to support research and innovation in wellness, prevention and
health care as is mandatory to overcome the current IT stagnation in healthcare, by leverage
mechanisms
that induce co-investment from the member states paralleling EC investments and
overcome the challenges associated with the scale of ambition of a paradigm shift in healthcare
infrastructures.

We didn’t make the cut for the next stage – the “preparatory action.” The final Flagships were on Graphene and the Human Brain Project. Henry  Markram is leading this, and has had the inevitable troubles with managing a project of this nature . I had looked at the HBP page a while back, hoping for something to do, but my connectome skills aren’t what they were.

ItsMe2 seems to have more or less vanished from the Internet, yet another salutary warning of the dangers of overdependence on the cloud as an outboard memory. The VPH/AMEE link persisted. I sometimes wish i had been able to be more active in the development of this project. Thinking about visions of healthcare, ItsMe2 was certainly a grand vision; personally one I would now modify . And in a way it became something far far different than anything I had thought of, with less of an emphasis on anthropology, social science, philosophy etc.

Nevertheless, now I am involved in the HSE CCIO , I find myself wondering if this grand vision is one that we could usefully learn from again. It is over five years since I sat in a B&B room in Ardee with my laptop and wifi dongle. In some ways the world is very different, but in many it feels similar – the way I work is recognisably that of 2010 (and before) and, for all the pace of change, the ItsMe2 vision does not seem any closer.

 

Advertisements

4 thoughts on “Information Transforms Medicine For Me: ItsMe2, the “digital me”, the future of health care, Big Big Science and me.”

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s