Peter is at the OpenHealth conference in Belfast, Northern Ireland today, and will be doing some blogging and tweeting (search for #openhealth on Twitter). Information on the event is at www.openisland.net It is being held at the Spires Centre and the Europa Hotel today, and tomorrow’s linked event will be at the University of Ulster Jordanstown Campus.
Today’s event is a one day free conference on open and connected technologies / services solutions for healthcare and the issues surrounding them, and also includes the official launch of BCS Health Northern Ireland – a new forum for knowledge sharing in Health Informatics & Connected Health in Northern Ireland. The current interim committee for BCS Health NI also includes Jonathan as secretary, and Paul Comac as Treasurer.
Jonathan Wallace opened the event and will chair today’s conference. The first speaker is Prof. Roy Harper, chair of BCS Health Northern Ireland, who outlined the aims of the group, and the wish to be open and inclusive as far as membership of the group – www.bcs.org/health/ni
Jean Roberts followed Roy to give a formal welcome from BCS and introduction, including formal greetings from BCS President Elizabeth Sparrow.Listen to this podcast
Please update your bookmarks, etc. We have fully moved to our new site for blogging health/medical and nursing informatics events, and other activities we may attend.
The new URL is www.hi-blogs.info – this points to our new WordPress installation (which is also at ucru.wordpress.com), where we will be doing most of our collaborative event blogging.
Our older sites are archived as they contain, we think, a lot of useful material that people may still wish to access. So, for the old portal, go to:
and for the event blogs, go to:
We will be continuing to blog and explore other Web 2.0 tools in 2009 and beyond. For some events, we will set up event-specific blogs, but most of our collaborative activity will be at www.hi-blogs.info.Listen to this podcast
We will be migrating to our new blogging home over the next few weeks. We will keep this blog as an archive for the time being, and maybe migrate it into the new site.
Visit us at http://ucru.wordpress.com/ and watch out for further news.Listen to this podcast
We had an excellent gala conference dinner at the New Connaught Rooms on Wednesday evening. Due to trying to get things to work properly on the BCS wireless and Ethernet networks, I was not able to take notes on the session by Celia Boyer and Petra Wilson on ‘Trustworthiness in the age of Web 2.0’; however, they covered the Health on the Net code and related issues , and generated discussion of how we might ‘kitemark’ reliable websites that are Web 2.0-based and on which content might be changing rapidly.
Matic Meglic, from Slovenia, talked about ‘Care Management using BPM: Case of depression’. He began by addressing the context of future healthcare, with the development of increasing health information and tools to enable patients to take care of own health, and communicate with others. As a result, patients develop new needs, seeking more control and choice, and 24/7 access online to services. There are moves from assisting/supporting healthcare (Medicine 1.0 model) to changing nature of healthcare (Medicine 2.0). With new emerging technologies, many of things that were done by health professionals can now be done by patients through eHealth services. He says there is a good number of open source business process modelling/management tools. He moved on to discuss an eDepression project which seeks improve processes, screening, diagnosis and care, to improve quality, patient outcomes, etc.
Anže Droljc , also from Slovenia, talked about ‘Using (open source) BRMS (business rules management system) for Guidance through Clinical Pathways in National Breast Cancer Screening Programme’.
Cristina Mazzoleni and Francesco Di Cerbo, from Italy, talked about ‘Open Source Software and Disability with Rehabilitation: Desert with Few Oases’.
In the afternoon, Jose Luis Hernandes Caceres, from CECAM in Havana, Cuba. He spoke about ‘Open source: just something more, or the only way to overcome the digital divide. Viewpoint of a researcher from a developing country’. Only 1.7% of population of Cuba have Internet access. They have the Infomed portal; 80,000 users with email with international access and a restricted ‘copy of Internet’ – www.infomed.sld.cu
My apologies to those who presentations I have not done justice to; hopefully you, or others, can add comments to fill in the gaps.
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In sessions addressing the general theme of ‘health records’, several speakers gave varying perspectives based in their personal experiences of using and/or developing open source health record systems. Firstly, Rolf Englebrecht covered his experience of free and open source electronic health records. He looked first at Mycare2x (http://www.hccgmbh.com/), based on Care2x, which was developed as a supposed open source solution. Designed for hospitals with specialised units, it is adaptable to ambulatory care – the requirements are defined by user cases (scenarios). But he and colleagues encountered problems in relation to its use, and did not believe it was fully open source.
He then looked to FreeMed (http://www.freemed.org/) – developed for multiple languages, and was generally satisfied with it. He discussed looking to move from Freemed to OSeHealth, ie an open source solution for eHealth, and also to trying to develop a European Freemed network.
Tom Beale, from Ocean Informatics and OpenEHR, talked about OpenEHR, a health computing platform for Europe. He talked about healthcare being an information-intensive business, with healthcare information captured in datasets during clinical work events. Clinical care is shared among multiple providers, leading to a need to share information. Information also needs to be aggregated to allow personalised healthcare and decision support. Healthcare information is complex and changing. The challenge is therefore semantic interoperability of systems.
15 years of eHealth standards, Tom suggested, have brought us no closer to ubiquitous sharing of even the most basic healthcare data. Has open source solved this? – no, he says, as many OS applications that have been developed are not interoperable; VistA allows VA hospitals to interoperate, but only because they all use the system. Vendors have also not solved the problems.
The start of the afternoon session saw Simon de Lusignan lead a workshop-based session on health records, titled ‘How are electronic health records used to support the clinical consultation?’ The focus is on a newly-developed open source tool for observing the effect of IT on the clinical consultation. Full information and downloadable materials are on the project website at http://www.biomedicalinformatics.info/alfa
The computer is increasingly becoming ‘a third actor’ in the clinical consultation between GP and patient, Simon states. The toolkit has been developed due to considerable variation between GP EPR systems and different systems giving different results from the same queries. Simon described the development over a period of years of using video capture of consultations, using different types of video capture systems to capture different aspects of the consultations (patient and GP activities), and different types of data, and different ways in which the data has been analysed. Open source tools have been developed for analysis.
The ubiquitous computing session had three speakers. Firstly, Johan Gustav Bellika from University of Tromso and Norwegian Centre for Telemedicine talked about the ‘Snow system’, a ubiquitous health surveillance system. Infectious diseases are the second most common cause of death worldwide. The system is named after Dr John Snow, investigator of the 1854 Broad Street cholera outbreak. It is ideal for health surveillance systems and the aim would be to identify infections much earlier in the infection processes than is currently the case. The system would be a peer-to-peer network to exchange data among primary care physicians, and so to try and develop system whereby surveillance data might be used for clinical decision support. His centre is also looking to develop sensor-based surveillance, which measures early indicators of infection.
Prof. Guang-Zhong Yang, from Imperial College, London, talked about ‘Body sensor networks – opportunities for medical informatics’. He also asked about the possibility of detecting disease, and intervening, much earlier than is possible today. Body sensor networks (BSN) are needed, he says, for patient centric healthcare. We have ageing population and increasing age-related chronic diseases, which result in rising healthcare costs. Current monitoring systems/tools give only a snapshot of a patient’s health – but ubiquitous monitoring can capture infrequent symptoms that may be missed by snapshots. With dynamic, 24-hour, home-based monitoring that is unobtrusive and minimally invasive, there might be possibility to intervene earlier. Bell’s law on evolution of computer technologies – http://en.wikipedia.org/wiki/Bell%27s_law
BSN is about more than hardware and data collection – looking at design of new biosensors to collect new types of data, and need to look at biocompatability of materials; power use (75% of power used for the wireless transmission) – body motion to generate power? www.bsn-web.org
Nick Hunn, Director of Advanced Technology with Laird Technologies talked about Bluetooth Medical Technology and ‘Wireless specifications for medical, health and fitness devices’. The economics of increasing amounts of GDP spent on healthcare no longer add up, hence the moves to cheaper alternatives, including care at home. Challenges are or enabling people to lead healthier lives and control of chronic conditions.
Bluetooth sees a need to develop new standards to support some of the moves needed to support home care etc. Bluetooth is currently used to replace cables, but there is no interoperability due to different products having different communications protocols. Power consumption is not optimised for many devices, due to wireless drawing on power consumption. Also looking at web connectivity for data sharing etc. Two new standards being developed – Bluetooth Health Device Profile and Bluetooth Low Energy Standard.
My apologies to anyone I have misrepresented in the above – some fascinating talks, some of which went over my head, but some of which I got absorbed in and neglected to take enough notes.
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This is the first of several belated posts summarising the EFMI STC 2008, held in London on 9-11 September, 2008 (see event website). The reasons for the lack of ‘live’ blogging have been covered in the preceding post; I can only use the excuse of being too busy to address the further delay. These posts cover my interpretations of some of what was said in some of the sessions; I have not covered everything, but if any participants wish to add anything in comments, please feel free to do so.
The day was opened and participants welcomed by David Clarke, Chief Executive of the British Computer Society (BCS), by Jacob Hofdijk, EFMI President, and by Graham Wright on behalf of the Local Organising and Scientific Programme Committees. Glyn Moody (opendotdotdot.blogspot.com) was the first speaker, explaining that his book “Digital Code of Life” was a “Rebel Code” approach for bioinformatics. He said that it is due to open source approaches that the human genome is in the public domain and not patented.
Turning to his main theme, on ‘why open source for health?’, he said that it gives more control and so is cheaper in the long term, as well as being more secure and more flexible. He said that Richard Stallman’s work on free software was inspired by the scientific method and culture of openness at MIT; the scientific approach to building on the work of others and contributing back to the commons. From this developed the idea of free software. Open source depends on users from an early stage of development, contributing to bug fixes – medicine/health works in same way, Glyn asserted.
Open source (OS) advantages are that it is distributed, not centralised, and is driven by collaborating teams of specialists. OS is powered by peer esteem – this not an optional extra – reputation is a key factor in how system works; ‘you are what you do, not who you are’ – there are clear metrics for success and reputation. OS is about altruism, not money – is healthcare about this too?
OS has traditionally stronger on infrastructure, not specialised applications – for example, the GNU/Linux kernel. Institutional inertia, which varies by country, is one of the strongest barriers to using OS, and the UK is one of worst offenders. Nobody wants to stake their career on something new, and so there is a culture of extreme risk aversion, which leads to burying ever deeper into the mistakes of the past. OS thrives in an environment of well-defined open standards – lack of common, open standards is a barrier.
Glyn went on to describe several ‘opens’, with openness in healthcare being more than open source – openness in general is important in healthcare, for example open content (eg Medpedia – medpedia.com), open access, open genomics (referring to the Bermuda agreement on making all genomic data publicly available), and open data (access to data being important for science). Open access and open data lead to development of open science and open notebook science (daily publishing of what does and doesn’t work).
In summary, Glyn suggested that healthcare is made for OS – and vice versa – but OS is just the beginning of openness.
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The EFMI Special Topic Conference (STC) 2008 took place earlier this week. I don’t think I was going to be able to do too much ‘live blogging’ of the event, due to having to present, chair sessions, and generally be involved as one of the organisers. However, I took some notes and will upload them as a couple of posts.
However, blogging the event proved to be even more challenging than anticipated. For some reason, the network (ethernet and wireless in the venue, the British Computer Society offices in London) caused a lot of problems; I was not able to save draft blog posts, not able to send an attachment to a Gmail, and had several other problems; as I can do all of these from home and did some on the train last night, I conclude it must be the BCS network that caused the problems. I heard of several other people also having problems. But then, it is only the leading computer society in the UK, so why should we expect the technology to work??
Some of you may have also seen the article posted by our opening speaker, Glyn Moody (>>>) in which he commented on BCS policy on browser use, concluding “if Britain’s leading computing institution thinks that Internet Explorer is the acme of safe, fast, standards-based browsing, it could probably do with some healthcare itself.” Frankly, as one of the organisers of the STC, I found it extremely embarrassing that we were put in this situation – and that their data projection system also did not seem to to like connecting to anyone’s laptop running Ubuntu (which I have used all over the world and just ‘plugs and plays’ usually anywhere).
The conference website is at http://www.chirad.info/efmi_stc
Further posts to come when I feel less tired and able to collate my notes.
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The first presentation of this afternoon’s parallel session is Andrea Cortinois, talking about ‘PESCA: developing and open source platform to bring eHealth to Latin America and the Caribbean’. PESCA is a virtual network based around open source solutions for use in low and middle income countries. The idea is to address a range of health problems through use of ICT, and create opportunities for local developments and contribute to local socio-economic developments. Much of the development will relate to local resources developed in Spanish, and of a repository of materials based in a virtual social network. An aim is to bridge gap between developers and users.
The second presentation is probably the mostly eagerly anticipated, especially by the geek brigade. Jen McCabe Gorman and Maarten Den Braber presenting ‘Nexthealth – an open source, web-based tool determining ‘what’s next’ in the evolution of consumer-centric care delivery’. Jen began by explaining that the presentation would be more ‘conceptual’ and aims to encourage discussion; she says that she and Maarten are ‘social entrepreneurs’. Jen sees the development of consumer-centric care, that might be accessed online and off at will. Maarten asked whether are already beyond Medicine 2.0, and whether next year would be 3.0, 4.0 or beyond – hence the safe term ‘Nexthealth’.
Jen says there are 3 types of people – innovators (ideas), interrogators (critics) and implementers (doers). Maarten says it’s ‘always about people’, not the technology.
The presentation for the session is at: http://www.slideshare.net/tag/nexthealth
What are the business models and how do people get paid, jen asked, in new emerging models of healthcare? (on Twitter, I ask – how does the model work in UK and other healthcare systems??). One development ‘American Well’, which is due to roll out in 2009, has addressed this and agreed systems of payment for patients to interact online with physicians, for example.
Maarten says there are 3 things the model helps with – eg decision support in helping people/patients come to decisions, eg type of diabetes insulin pump. Consumers have options, people can be pointed to other resources and information developed by other people and organisations.
First question – healthcare goods cannot be compared with other types of goods and services, says the questioner (viz the disclaimer from the presentation). Jen says this is new ground, and there is evidence healthcare is becoming more commoditised. Another questioner (who uses an insulin pump) says she made the decision, based in similar parameters to how she would choose mp3 player. Rod asked how the model applies where there is not a commercial driving force, eg social medicine through taxation. Jen says payment is the invisible factor, and it is not inherent in the model and consumer is not limited by where the cost is dealt with, but their model can still be used to guide decision-making and choices. Maarten points out that, as he and Jen come from different countries and healthcare systems, they have already had discussions around differing healthcae systems and fee/payment/taxation/reimbursement models.
Another questioner says model works for those ‘not too ill or old’ -but how does it work for those who are? – the complexity and co-morbidity often found in care of elderly. Not sure I followed Maarten’s answer to the question and how the model works. Issue was also raised of ‘citizen’ versus ‘consumer’.
Jen says code will be available as open source API.
The presentation generated a lot of discussion, which will doubtless continue after this event.
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The first speaker of this session is Luis Luque, from Tromso in Norway, talking about ‘Study of the ePatient as a provider of health content in the Internet’. he began by taking about the numbers of people creating video and other rich media content about health and disease conditions. Luis is doing a PhD studying issues around content created by patients on the Internet; he found few studies and little literature on this; much of what exists relates to patients an consumers of information/materials, and little about them as providers/creators of content. Can Web 2.0 result in increae in quality of online health information, or does the amount of material, which may not have authoritative basis, result in general lower quality of information? Does it result in collective intelligence? Or is it a real issue that we need to consider?
He undertook a survey looking for bogs, videos, etc and found 29 respondents to undertake the more detailed questionnaire/study. He was looking at views on patient generated content (PGC), and issues around confidence in the nature/source of the content, and how they would react if the information/indication of the PGC differed from that providers by their doctors. He also explored the motivations of patients who generate materials. He found similar levels (about 17-18%) of complaints and negative portrayals about ptients in doctors’ blogs and doctors in patients’ blogs. The motivations of content creators are sharing support and knowledge. He says patients should be seen as providers, not just consumers, of content. Suggests the need for guidelines (eg HoN) to be adapted to support PGC – eg, an ‘ePatient Blogger Code of Ethics’.
Further information is at myhealthservice.itek.norut.no
The second speaker is Joanne Mayoh, from Bournemouth University, talking about ‘Will the development of Web 2.0 technology result in a preference for quantity over quality?’ She is a PhD student, and began by describing her journey of understanding about Web 2.0 and its potential, and issues of quality of online health information. Mention of :
Online quality issue or raising skills of public in evaluating online health information?
The third speaker is Sheryl Mitchell, from Women’s College Hospital in Toronto, talking about providing women with tools for evaluate online health information. She introduced the ‘women’s health matters’ website (http://www.womenshealthmatters.ca/) and the French language version (http://www.femmesensante.ca). The sites support discusion forums on health issues, and personal stories of heath experiences. They have produced a toolkit to help women locate and use online health information: http://www.womenshealthmatters.ca/toolkit/index.html
The final speaker, Cornelia Van Uden-Kraan from University of Twente in The Netherlands, talked about ‘Empowerment of participation in online support groups for patients with arthritis, fibromyalgia and breast cancer’. She looks at the different types of online support groups (discussion forums, chats and email-based groups); she says there is no direct evidence for patient empowerment arising from participationin online support groups. She described a study of empowerment through participation in these groups; went to several groups and asked owners for permissions to approach participants. She desribed levels of empowering processes, including exchanging information, being better informed and enhanced social wellbeing, as well as feeling more confident about treatment and enhanced self-esteem.
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Gunther and colleagues’ photos are available on Flickr:
and through the event’s Crowdvien site: http://medicine20.crowdvine.com/
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