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M E D I W A L E S

Design for Life Innovative support for wheelchair users

Close to the Bone New imaging technique

Informatically Yours Data for health

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From information to innovation Information technology has exponentially increased the speed with which data can be collected, moved around, and organised. But when it comes to making innovative use of it, the ingenuity is human. This exchange is at the heart of all the activities we feature in this edition of the Review: in each case, people are using information to redefine some longstanding assumptions about human healthcare, and reveal new possibilities for its improvement. Our lead feature looks at one of the hardiest of old technologies: the wheelchair. From temporary invalids to those with severe long-term disabilities, wheelchair users (some 1.2 million of them in the UK alone) find their capabilities constrained by design limitations that have remained virtually unchanged for half a century. The work of our interviewees shines a spotlight onto a vital, but largely disregarded, information gap, and the new techniques being developed for bridging it – from workshops to artificial neural networks – demonstrate how the right information can multiply the value of existing resources. The technology discussed in our Product Review arose from information that’s been available for some time, in the form of data collected by functional Magnetic Resonance Imaging (fMRI). It remained for our featured company to discover the potential latent within this information, now being translated into a new imaging technique that is already making an impact on oncology research worldwide.

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Coralie Palmer Editor

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Contents F E AT U R E S Design for Life 4 Bringing better postural management to wheelchair users

PRODUCT REVIEW Close to the Bone 11 Technology for a new window on bodily microstructures

RESEARCH REVIEW Informatically Yours 14 Putting electronic data to work in healthcare

If you get postural management wrong for long-term wheelchair users, it’s like a slow poison

Meanwhile, the proliferating electronic data from routine daily transactions is rapidly becoming part of the health technology paradigm. In our Research Review we look at how a Welsh institution is leading work on its integration and at the potential not only for improving current health provision, but for developing innovative programmes for public health. After November’s special Medica issue, the January 09 edition of the Review will lead with the prizewinners of 2008’s MediWales Innovation Awards. We’ll be talking to these companies about the practical reality of innovation: how their technologies function, the problem-solving demanded by their development, and the challenges of marketing them at home and abroad. We’ll also be equipping readers for their New Year with a supplement on January’s Arab Health Exhibition in Dubai, and a preview of what’s in store at the annual landmark BioWales event in March. We look forward to seeing you there.

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Design for Life Why are so many wheelchair users still relying on a product that fails to meet their needs? Coralie Palmer talks to members of a Welsh-based collaboration that’s committed to improving this ubiquitous but neglected medical device. ‘The standard wheelchair is the Trabant of modern design.’ This trenchant opinion is the driving force behind both a business and a new Special Interest Group devoted to tackling the problem.

The speaker is Rod Palmer, Managing Director of Performance Health Products (PHP). From its base in Pontyclun, the company supplies its unique postural management system to wheelchair users throughout the UK and to 18 countries worldwide.

Because being seated is the default position in which longterm wheelchair users spend their lives, the proper management of that posture is a key factor in deciding how active their lives can be. If for example a person’s shoulder is wrongly positioned, or insufficiently supported, that can impair the extent to which the fingers of that hand can be used – and therefore radically impact a whole range of functions, from basic eating, drinking and washing to the performance of work or hobbies. PHP was founded precisely because postural management is not incorporated into the basic wheelchair format. This first became clear to Rod during his work on rehabilitation at Rookwood Hospital some 15 years ago, but the fundamental design problem is a good deal older than that. As Rod explained, the wheelchair we’re all familiar with is based on the ‘ministry’ design developed during

the Second World War, when it was needed urgently, in great quantities, to support the rehabilitation of newly disabled but otherwise healthy – and predominantly youthful – war casualties. While that design has remained essentially unaltered, the profile of the people using it has changed dramatically. Today’s wheelchair user is typically someone with a long-term disability and/or severe vascular, muscular and skeletal problems. In addition, the demographic of an ageing population means that many users are elderly people with the chronic conditions associated with increased longevity. ‘So’, Rod pointed out, ‘the ubiquitous canvas seat and back which was entirely practical in the postwar years can now offer no controlled postural management at all.’ Although the postural needs of disabled clients vary infinitely in scale and detail, many wheelchairs are designed to conform to standardised ‘anthropometrics’ (body measurements). ‘But the most obvious characteristic of many disabled clients,’ said Rod, ‘is that they fall outside these norms.’ In fact by his calculations, the standard wheelchair disallows 73% of the sizing and angle requirements needed to achieve a beneficial posture, and 80% of orientation needs for many clients.

In this simple form, the wheelchair has been reduced to a basic commodity that can be produced in bulk at low cost – but with a functional price to pay. ‘While it’s cheap to buy’, said Rod, ‘it’s expensive to use.’ Trying to provision clients by adapting the standard wheelchair demands a range of third party modifications that frequently exceeds the cost of

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The Stewart wheelchair:1939-present V-trak

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the wheelchair many times over. And costs are already severely constricted: Professor Martin Ferguson-Pell, speaking for UCL’s Aspire Centre for Disability Sciences, suggests that current funding levels provide only one-third of what’s actually required to properly meet the needs of longterm wheelchair users.1 This is the context for PHP’s specific product focus. The company designed the ‘V-trak’ as a modular postural system, comprising a

V-trak mounting

backrest that can be configured to the precise user profile along with units for both head support and lateral support – the latter functioning at thoracic or pelvic level or both. ‘The equipment can be incorporated into virtually any wheelchair in the world,’ Rod continued. ‘As it’s modular you can mix and match and the permutations are endless, so you have enormous flexibility that also adapts to the changing needs of the user.’ To ensure its proper implementation, an intrinsic part of PHP’s work is to train the people who will ultimately be configuring the system for the end-user. These are the health professionals – including rehabilitation engineers, physiotherapists and occupational therapists – who make up the ‘front

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line’ of NHS wheelchair provision. At this hands-on, problem-solving interface, these practitioners work to assess clients’ needs and fit their equipment accordingly. Theirs is no easy task: working in an environment that is constrained both financially and in terms of available technology, they also have a remit that covers a vast range of bodily conditions.

These difficulties are compounded by a shortfall in information and training on how to meet specific seating and postural management needs. As with the V-trak, specialist training tends to be limited to the use of particular products and provided by the manufacturers concerned. ‘I really don’t see the quality of education that should be available to practitioners in this area’, said Rod, ‘in terms of practical, independent guidance on how to reach the best possible solution for their clients.’ In his view, tools for more effective analysis at this stage can give consistently better results for wheelchair users; equally importantly, better analysis could fuel demand for badly-needed improvements in product design. In working for PHP at home and abroad, Rod has built up a network of contacts with people who share the same frustrations, and the same belief in the need for both better education and better products. Some of these people have become PHP distributors or collaborators. But in recent years a more closeknit group has evolved from this network, coalescing around the issue of how to support more effective problem-solving techniques for practitioners working with wheelchair users. It was this small cluster that matured into what was formally established in the autumn of 2007 as the Postural Sciences Group (PSG).

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As with many disciplines, it’s at conferences and events – such as those run by the Posture and Mobility Group (PMG) in the UK, Resna in the US, and the International Seating Symposium (ISS) worldwide – that people working in this field often seek solutions. But the common experience of PSG members is that attendance all too often yields little that could serve at the practitioners’ interface. ‘From our perspective,’ said Rod, ’there’s a gap that’s not being bridged, between the research being done and the problems that practitioners actually grapple with on a daily basis.’ Most importantly, the Group too often sees questionable received wisdom being treated as dogma that’s incorporated into current work. ‘A classic example,’ said Rod, ‘is the decree that the pelvis is the primary consideration in seating. Yes – of course it’s important. But so are many other

elements, because they are interdependent.’ The correct head position, for example, is vital since it will pull the body after it, and so can distort posture and even compromise vision. Or in hemiplaegia, an intrinsic weakness on one side will cause the client to fall however the pelvis is accommodated, so it’s essential to provide the correct lateral support. Nevertheless PSG still sees a commonly accepted over-emphasis on the pelvis in postural management, with results that can compromise clients’ functionality or even health.

Against this background, PSG’s mission is to offer the latest validated, practical guidance and training to all those providing a seating and mobility service.

Its core members come from a mix of academic, clinical, therapeutic and design backgrounds and meet regularly. Drawing on both their own experience and emerging research, they identify areas that need clarification and debate possible techniques and protocols. From this process come PSG’s own training and education programmes, which are deliberately divorced from the product-oriented method. The specialist knowledge that they summarise is based on key principles from a range of disciplines, such as biomechanical research on how body parts function both independently and together. By the same token, these programmes eschew the encyclopaedic approach. As Rod observed, this is not an area of neatly defined conditions with matching answers: practitioners have to respond to the unique mix of factors making up the needs of each individual wheelchair user. ‘This is why it’s essential for them to understand in depth how the relevant principles can be applied,’ he said, ‘because then they can work out their own answers to a set of problems, and find the optimum solution for each client.’

manufacturer, including PHP.’ Meanwhile PSG is planning to present at the 2009 PMG event, and is discussing a contribution to the annual conference hosted by London’s Royal Hospital for Neurodisability. PSG is also active at conferences and events in Europe and the Middle East, delivering both presentations and training workshops. The interest from the Gulf States is such that the Group now maintains its own consultant in the region to coordinate their activity. With her help PSG recently hosted the visit of a small group of health professionals from the United Arab Emirates (UAE) for an intensive training course on all aspects of running a seating clinic. ‘In many ways the resources in that region are being developed from a standing start,‘ said Rod. ‘This particular group wanted to come to the UK so that they could review the whole process on the ground, from

In providing training seminars that are uncoupled from product supply, PSG looks to raise both standards and expectations, and thereby to exert positive pressure on manufacturers and designers to provide better products. As a PSG member, Rod has already provided training seminars and presentations to a number of NHS Trusts in the UK in the last year.

Use of principal seating angles

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These sessions are entirely distinct from the V-trak training that PHP supplies as part of its product support: ‘I make it very clear that I wear two hats, and which one I’m wearing at any time,’ said Rod. ‘PSG sessions don’t reference products or brands from any

Elements of the Matrix System

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design and manufacturing issues to assessment and provision.’ From the Group’s perspective, the fact that many of the Gulf States are new to the field is a positive factor, because it means fewer preconceptions and more openness to innovative thinking.

The work of one founding member vividly illustrates the benefits of PSG’s belief in challenging conventional thinking on both education and design. At the Royal Hospital for Neurodisability, Dr Steve Cousins is in charge of Biomedical Engineering Services, which accommodates the seating and postural needs of clients with the most complex and severe long-term conditions. ‘Many of our patients are young men with brain injury from traffic or sporting accidents,’ said Steve. ‘If you get seating and posture wrong with these patients, it’s like a slow

poison. There are multiple factors to integrate: spinal collapse, pressure on the organs, digestive problems, potential pressure sores, muscle spasms, control of body temperature… So you’re dealing with really complicated combinations.’ The shortcomings in both techniques and equipment available have made Steve a serial inventor. Like Rod, he saw the need for a modular solution, but one capable of many more very subtle adjustments. In response, he developed the Matrix system: made up of small components (averaging 25mm) and articulated with balland-socket joints, the Matrix can be shaped to the client’s body – around the back and sides, and along the backs of the legs – and then locked into position to provide a customised fit that is both supportive and corrective. ‘With our newest dynamic system for example,’ said Steve, ‘we can actually de-rotate to correct spinal collapse.’ To attach the Matrix to a wheelchair, Steve turned to the PHP system, whose componentry has the flexibility needed to accommodate the range of movement involved. ‘So we use their mounting system, and then we replace their macromodules with our micro-modules,’ said Steve. ‘The systems are

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complementary: where V-trak stops, Matrix starts.’ BES has recently begun training a number of PHP staff in how to fit the Matrix: with this addition to its products, the company can enhance both the range and quality of its disability support. Assessment of BES patients is as complex as their conditions. Here again optimising the education of therapists is paramount, and Steve is involved in a project to develop new techniques. ‘At the moment we have a 14-page assessment form for each patient,’ he explained, ‘and that in itself is unwieldy. But we also have the problem that when our postural management therapists – who get to be really expert in their work here – have to leave, they take about 85% of their knowledge with them.’ The challenge therefore was to develop a means of capturing and codifying the therapists’ expertise while at the same time streamlining the assessment process. What’s evolving as a result is a computerised seating equipment assessment tool using artificial neural networks (ANN) with a twofold function. Firstly, this technology – dubbed the ‘Seat with ANN’ – is designed not only to collate the analytical information, but also to define the parameters of its most important elements. ‘When we’ve clarified the most important parts of the analysis,’ said Steve, ‘then we can train new people much more effectively.’ Secondly, the machine will aid the staff in reaching their final prescription for a patient. At each stage of the process, it will predict what the outcome will be and why: this can then be compared with the clinicians’ and therapists’ assessment. ‘Many things are clear cut, and the system will reinforce that,’ said Steve. ‘But it’s the areas of ambiguity that are the the problem, and that’s where this input

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could be crucial.’ So while the work here is far more complex than that in most wheelchair services, the same need emerges for improved analysis and training.

Current and potential future changes in NHS wheelchair provision reinforce the significance of PSG’s work, and the Group is now seeking charitable status. The ageing population is being augmented by the ‘baby boomers’, a generation typically demanding better provision of both goods and services than its predecessors. At the same time the supply of health professionals such as orthotists is declining just as the need for them is increasing. Add these factors to the perennial cost constraints within the NHS, and it amounts to wheelchair services having to do more with less: on the horizon is the prospect of them going the same way as dental or eye care. Many Trusts already operate a voucher system, where wheelchair users can redeem the voucher against the cost of more expensive equipment than the NHS can provide. ‘I think we’re going to see the development of a two-tier system,’ said Rod, ‘where the NHS will provide for those most financially in need and the most clinically complex cases. It’s the private sector who will be catering for the remainder.’ In that situation, it becomes ever more important to disseminate the best assessment and fitting techniques as widely as possible. ‘The provider should be working under the auspices of a qualified therapist,’ said Rod, ‘and the analysis for assessment and fitting has to be robust. The user needs to be able to make a purchase on the basis of what they should have, not just on what seems to be available.’

As a charity, PSG would be better able to organise comprehensive provision of its programmes on a national scale. ‘I think we can offer independent, structured training of a kind that’s badly needed and otherwise missing in this field,’ said Rod. ‘But I also think we could be an important resource for manufacturers, in terms of coordinated information about what products actually need to do and how. And with better education and better products, you get a better quality of life for the wheelchair user. Which is what it’s all about.’ coralie.palmer@mediwales.com

1Ferguson-Pell,

MW: Final Report of the SCAMP project: Increasing mobility - Changing Lives (Institute of Orthopaedics and Musculoskeletal Science, University College London, 2001)

Performance Health Products Unit 1, West Side Cambrian Industrial Estate Coed Cae Lane Pontyclun CF72 9EX Tel: 01443 236530 Email: info@v-trak.com Web: www.v-trak.com Postural Science Group Contact PHP

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Bristol Urological Institute, Southmead Hospital, Bristol BS10 5NB T: 0117 959 5526 F: 0117 950 2229 W: www.biomedhtc.org.uk

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Close to the Bone A new imaging technology developed to assess bone health offers improved techniques for cancer diagnosis, disease monitoring and drug development. This radically new, adaptive technology is the brainchild of Osteotronix, based at the Technium complex in Swansea. As their name implies, the company set out to develop a more accurate diagnosis for the potentially crippling disease of osteoporosis. While the body breaks down and renews bone throughout life, renewal slows with age and osteoporosis becomes more common: bones become less dense, more fragile, and more prone to fracture. Among the over-50s, the condition affects one in three women and one in 12 men. Given the ageing population typical of developed countries, effective prevention and treatment of this disease is becoming an ever-higher priority: in particular, the identification of people at risk of fractures. In the UK some 310,000 osteoporotic fractures occur every year, at a cost of £1.7 billion – expected to increase to £2.1 billion by 2010. Currently, the device most commonly used to assess bone health is the DEXA (Dual Energy XRay Absorptiometry) machine. But DEXA can only measure bone mineral density, and the correlation of this with the risk of fracture is in fact very poor. The clinician really needs to be able to track changes in the actual structure of bone. Each

T. Dale, Cardiff University

The BioMed Centre is part of the Bristol Urological Institute, an international centre of excellence for urological research and education. We can provide the following services to help your organisation bring your innovations for urinary continence to market:

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Trabecular bone structure

bone is made up of an outer shell of cortical bone and an inner ‘honeycomb’ of trabecular bone. It’s the state of these microstructures that accurately reflects bone health and therefore the risk of fracture.

The new technology developed by Osteotronix is the first to yield a highresolution, in vivo delineation of these bone microstructures.

It is implemented via the MRI (Magnetic Resonance Imaging) scanner, although it’s previously been impossible to achieve fine resolution of such tiny structures – less than 1mm in size – with imaging techniques. Both CT (Computerized Tomography) and MRI demand long scan times, during which any movement irrevocably compromises resolution. A patient can be isolated for 15-20 minutes in an MRI scanner, where even normal breathing causes blurring.

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Nearly all of that time is spent collecting the data needed to create the vivid images we associate with MRI. In a classic bit of lateral thinking, Osteotronix developed software that enables the scan to generate all the information needed about bone microstructure over a particular area – but without creating an image. This dramatically shortens the scan time, producing not an image but a highresolution measurement of the targeted bone structures. ‘Remarkably enough,’ said Osteotronix CEO John Heinrich, ‘we didn’t find a single instance of this having been done before – of using this data in this particular way to extract structural information.’ Osteotronix christened the technique structural spectroscopy, and it soon became clear that it could be applied to other microstructures besides bone. ‘It was then that we began to realise just how great the potential was, the range of applications,’ John went on, ‘because for the first time we could assess accurately, within the body, these very fine structures.’ One such structure is angiogenesis, the sudden and chaotic increase in the growth of blood vessels around a tumour. Cancer by definition has a higher metabolic rate than normal tissue and requires a larger blood supply, so angiogenesis is a key determinant of a tumour’s level of aggression and activity. At present there is no good in vivo technique for measuring this microvasculature and its changes, but it’s just this capability that is offered by structural spectroscopy. It captured the interest of Dr Anwar Padhani, consultant radiologist at London’s Mount Vernon Cancer Centre. A leading expert on imaging angiogenesis, Dr Padhani now sits on the Osteotronix Advisory Board.

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Until now clinicians have had to make these assessments through bone or tissue biopsies, taking pathology samples from patients that are then imaged and analysed in the laboratory. But biopsy is invasive – in itself a risk factor – and often painful: it is not therefore a technique that allows repeated

Healthy Bone

ductal structure of mammary glands that are suspected to indicate the onset of breast cancer. Meanwhile at the University of California, Professor Graeme Bydder will be monitoring the development of the cirrhotic structure in liver disease, common precursor to liver cancer.

staff have been somewhat taken aback by how eagerly medical researchers have responded to their work, nationally and internationally. Osteotronix has developed structural spectroscopy as a software package, fineSA, that is compatible with any MRI machine, and the company is now engaged in collaborations with specialists worldwide.

By offering a unique window on microstructures within the living body, this technique can enhance both the diagnosis and monitoring of disease – cancer being a notable example.

Osteoporotic Bone

testing. By contrast, structural spectroscopy can be repeated without risk or distress to the patient, enabling both in vivo diagnosis and the monitoring of response to treatment.

networks). The trabecular structure of bone changes in the vicinity of bone tumours: accurate in vivo monitoring of those changes could offer a means of assessing the cancer’s advancement.

Given this unprecedented capability, and the range of its potential applications, the company could see the ground-breaking potential of their technique. But even their own

Another collaborative study is under way at Cardiff University’s School of Biosciences, where Professor Trevor Dale and Dr Richard Clarkson are looking at sudden changes in the

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Tumour Vessel

Some medication has been found to deplete bone, and now these changes can be monitored. A study at Cardiff University will look at the role of diabetic medications on bone loss; while a group at Leeds & Sheffield Universities is using the technique in a study of women being treated for breast cancer, to determine the cause of their increased bone fracture rate.

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Equally importantly, structural spectroscopy can be applied to drug development, particularly in relation to pre-clinical research and preclinical diagnostic imaging. Here the same needs apply for accurate measuring of microstructures in animal testing. ‘Our technique will give researchers the ability to track changes more accurately,’ John explained, ‘so that you get better clinical results, in principle using fewer animals over a shorter period of time.’

The original work on osteoarthritis also highlighted another key feature of the Osteotronix technique: its ability to track the effect of drug regimes over time.

The bone microstructures that were the technology’s original focus are now being studied in relation to bone cancer, through a collaboration with Professor John Crues of the University of California in San Diego (also head of RadNet, one of the world ’s largest radiology

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The sheer scale of the costs involved in drug development mean that these improvements represent a major asset. At each stage of the process, it’s essential to be able to

T. Dale, Cardiff University

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assess as rapidly as possible whether potential viability justifies a move to the next developmental step – and as each step typically sees costs expand by a factor of 10, facilitating the decision to terminate or continue is paramount. ‘So we think the benefits of our technology are potentially very significant,’ John continued. ‘That opportunity will probably lead our

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clinical market, and the potential users we’re engaged with right now include a large number of preclinical researchers who perceive the value of this tool.’ The technology of structural spectroscopy will support a broad range of applications in different disease areas, and this is reflected in the Osteotronix strategy for product development. ‘There will undoubtedly be specific aspects of the analysis – and very probably of the acquisition technique – that will be particular to a given area,’ said John. ‘So we’re looking at producing separate product packages for each designated application.’ The first of these is likely to be tailored for use in particular oncology processes. Meanwhile work continues on developing the fineSA technology as a tool for detecting osteoporosis, and a related product on the horizon is the translation of that specific application into a stand-alone, compact device that can be used by health professionals in primary care to test for the condition. For a company formally incorporated in 2006, the speed of development is notable. Given the global interest in their technology, the momentum is unlikely to slacken.

John P Heinrich Director & CEO Osteotronix 12 Technium One Kings Road Swansea SA1 8PH Tel: 01792 485 705 Email: info@osteotronix.com Web: www.osteotronix.com

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The computer-led revolution in purchasing and planning, supplying and servicing generates a wealth of constantly augmented information about the population. In the health sector as elsewhere, professionals see both great potential and great challenges in making best use of a rich information resource that is, as yet, scarcely tapped. The Health Information Research Unit, based at Swansea University’s Institute of Life Science, is at the leading edge of work to build models for creating public health benefit from these myriad data sources. As its codirector, David Ford takes the long view on both current and future developments in what’s now commonly termed ‘health informatics’, and outlined for the Review some of the most salient features of this new and still evolving landscape. One of its most visible characteristics is displayed in the changing nature of health technologies. Most of us are now accustomed to the concept of ‘intelligent’ devices that – whether or not that’s their primary function – are able to collect, communicate and/or respond to data about the patient. From blood pressure monitors to implants, such devices are becoming a familiar presence, not only at the hospital but in the home. Increasingly, these devices are also required to connect up: not just with each other, but with additional information systems in primary, community and hospital care. The blood pressure monitor, for example, might incorporate an alarm designed to alert a GP, community nurse or consultant to any change associated with risk. ‘Now obviously,’ said David,

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needs to be done, the Continua initiative represents at least the start of a push that urgently needs to happen in both the private and public sectors.

Informatically Yours In developed societies, almost every daily activity now leaves in its wake a trail of electronic data: data that, however seemingly inconsequential, has potential in terms of public benefit.

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‘these technologies have been developed by different manufacturers in different ways over time. And that’s where the problem lies: because as yet, there are no universally accepted standards of connectability and communication for medical devices. ‘To return to our blood pressure monitor,’ David continued, ‘if a GP had several patients with monitors from different manufacturers, it’s not automatic that any of them – let alone all of them – would be able to communicate with the GP through one system.’ The situation is rather as if, for the average home computer user, instead of just Mac and PC there were as many different operating systems as there were manufacturers, but without a shared communications platform.

This means that throughout the healthcare technology environment, connectivity cannot be assumed – rather the reverse. Adoption of such technologies is proceeding at a pace that demands the addressing of this problem. One response has been for some manufacturers to produce a group of devices used for a particular range of treatments – which means of course that they will share a common system. But given the speed of the device market’s expansion, and the diversity of suppliers characteristic of innovative sectors, this is neither a practical nor a beneficial solution for users. Rather than being proprietary about the issue, manufacturers are going to have to work with each other to begin taking a different and more

One of the most widely reported – not to say contentious – examples of the challenges posed by connectivity is that of integrating IT systems within the NHS.

Informatics lab simulation: patient access from home

Whether in England, Scotland, Wales or Northern Ireland, the NHS IT in use currently deploys a colourful variety of different systems and suppliers – and connectivity is emphatically not yet a given. At primary care level for example, this

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essential benefits of healthcare IT – its ability to share clinical information speedily – is not necessarily supported beyond the immediate user group. ‘The same problem exists in within hospitals too,’ David went on. ‘You get pathology systems that don’t always talk to the clinical systems, these don’t always talk to the administrative systems, radiology is often separate, and many wards aren’t connected up to any of them. It’s getting better, but there is still a huge amount to be done.’ In England, the response to this situation was the spectacularly expensive Connecting for Health initiative. A classic example of the

co-ordinated approach to this complex aspect of device design. One example of such an initiative already under way is the Continua Health Alliance, a collaborative network that includes many of the sector’s major international players. Aiming specifically to promote connectivity across health technologies, its emphasis is on self-managed health and the care of age-related and chronic conditions. For the latter particularly, telecare is one of the fastest growth areas: it’s becoming a key resource in allowing patients to be monitored and treated at home, and therefore one where interoperability is at a premium. Earlier this year Continua issued its first set of connectivity guidelines designed to simplify the sharing of information between users and health professionals, using common communication channels such as telephones, mobiles, PCs and settop boxes, as well as other dedicated health devices. While it’s still early days in terms of what

State-of-the-art server and IT network facilities to develop and test next-generation healthcare software and systems.

means that a GP surgery’s system might not be able to communicate with those of the relevant hospital departments or community teams. Consequently one of the most

‘big bang’ approach, this prestige project aimed to fix everything for everyone all at once, but has since come equally spectacularly unstuck. In Wales

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where people die if you get it wrong, we can do it on a proper experimental basis. We can bring in doctors and nurses and notional patients and model these circumstances, and test-drive them and refine them until we’re happy with that technology.’

Alongside this work, the Health Informatics Research Unit is working to build up a data collection that would be able support large-scale public health projects.

Informatics lab simulation: Hospital access to all relevant information, providing accurate diagnosis and treatment plan

meanwhile, the Informing Healthcare programme is taking a very different approach to building a national programme for its NHS IT, and here Swansea’s Health Informatics Research Laboratory is playing a central part. The key difference, David explained, is that Informing Healthcare not only has a much smaller budget but also a much longer timescale. The approach is fundamentally evolutionary: taking as its starting point the systems in place at present, it aims to make incremental, tested improvements and replacements, steadily progressing towards a fully integrated system that can serve users throughout Wales. Most importantly, this is a process that gives time for the experiment and evaluation that is essential for such a large, complex and innovative project. At the Health Informatics lab, a variety of different healthcare settings have been constructed as scaled-down

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samples: a patient’s ‘home’ in a cubicle; a section of a hospital ‘ward’ with a bed; a little GP practice; a call centre. ‘We’re now in the process of loading in every NHS system that’s out in the Welsh health environment,’ said David, ‘so we have a version of it running here. That means we can take a challenging healthcare situation and recreate it: fairly basically in terms of the physical environment, but absolutely accurately in IT terms.’ It’s an approach that allows the team to explore the logistical and human, as well as technical, complexities of connectivity: the aspects, in fact, of systems experienced ‘live’. David outlined an example: how might an ECG and a blood pressure monitor with integrated alarm be linked with each other and the surrounding systems, so that all users can access appropriate information? ‘Our lab programme,’ he continued, ‘means that instead of trying this out in the real world

‘This data is about anonymous individuals – that’s important,’ David explained. The data is however profiled to a degree that enriches its potential for research into disease diagnosis, prevention and treatment. Managed data collection for this purpose is becoming an increasing priority in health systems worldwide. A national project already under way in Britain is that of the UK Biobank project, which aims to recruit half a million people between 40 and 69 over the next few years. The Biobank data will be a key resource for long-term research into how genes, lifestyle and environment interact to affect our risk of disease in middle and old age. Profiled information is also becoming ever more important to the process of drug development. The emphasis is increasingly on the ‘tailoring’ of pharmaceuticals at a molecular level, to produce drugs for a narrower, more precise range of users. Such drugs can both have fewer side effects and be more effective. But in developing them, this ‘tailored’ factor also narrows the range of suitable subjects for clinical trials, making recruitment that much more complex and

logistically demanding – adding cost to an already notoriously expensive process. Large-scale profiled data could be vital in helping to simplify that search. In the growing significance of data resources like these, David sees on the horizon possibilities for a major Welsh opportunity. ‘A population like ours,’ he said, ‘if it was so encouraged and wished to do so, could actually be at the leading edge of work in this area. Here’s a country that has a national identity, a geographically defined population, and a history of high-quality work from people like Dr Julian Tudor Hart and Professor Archie Cochrane, who led the way in getting populations involved in publicspirited research.’

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South Wales mining community, he organized independent populationbased research to improve health service provision. Famously driven by a passion for public service and the NHS, he is best known for his formulation of the “inverse care law” in 1971, which showed how patients with the greatest need tend to receive the poorest healthcare. These achievements make a signal contribution to what is very much a living legacy: indeed, the Biobank project is led in Wales by Dr John Gallagher, who started as a researcher sharing an attic office in Cardiff with Prof Cochrane. ‘So there’s an impressive track record,’ David continued, ‘and I see a real potential for building on that work, for Wales to become an international presence in public health research.’

Hence the significance of the Unit’s commitment to its managed data collection – and here David also sees potential for influencing individuals’ management of their own health. Earlier this year, Cardiff University’s founding of the Cochrane Chair in Public Health honoured the work of the Professor, credited with changing the course of medical research 50 years ago. Taking it from the bedside and laboratory out into the community, he signed up thousands of people in the South Wales valleys to take part in public heath studies in the ‘50s and ‘60s, including ground-breaking research into the lung disease pneumoconiosis. Meanwhile Dr Tudor Hart, having theoretically reached retirement age, is still a highly active contributor to the public health debate. Throughout his work as a GP in the

‘The people who should be at the heart of this process,’ he said, ‘and who should benefit from it, are the individuals whose data is being collected. There needs to be a way of feeding back this data to them, because it can help to change behaviour that’s associated with health risks.’ This is where the focus moves from diagnosis and treatment, to the prevention of disease – and to encouraging people to take a more proactive, selfmanaged approach to better health. For an NHS under ever-increasing pressure, preventative medicine is inevitably becoming more and more of an imperative. Much of the information given to the public deals with disease risks and related

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behaviours in single-issue terms: smoking and lung cancer say, or diet and obesity. But a lifestyle, like a life, is made up of a combination of factors: to make constructive changes, people need to understand the collective effect of their own particular habits on themselves – not as a mass, but as individuals. When research data collected from consenting participants is fed back to them, it can enlighten them in unexpected ways: we know from insomnia studies, for example, that people can be radically mistaken in the amount of sleep they actually get. By being able to access their own health data, people can be empowered to take actions that will improve their health. Participants in the Biobank project, for example, received information on their own blood pressure, weight, lung capacity, bone density, and body mass index. We are still only beginning to establish how such feedback loops could and should function – but it does mean that there is, on the horizon, the hope of a health informatics-based ‘virtuous circle’ being able to play a key part in better public health.

Health Information Research Unit & Health Informatics Research Laboratory Centre for Health Information, Research and Evaluation (CHIRAL) Institute of Life Science School of Medicine Swansea University Swansea SA2 8PP Tel: 01792 513400 Email: chiral@swansea.ac.uk

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MediWales Review - Summer 2008