The Royal Society of Edinburgh (RSE) is pleased to respond to the Foresight Healthcare Panel's consultation on Healthcare in 2020. The RSE is Scotland’s premier Learned Society, comprising Fellows elected on the basis of their distinction, from the full range of academic disciplines, and from industry, commerce and the professions. This response has been compiled by the General Secretary with the assistance of a number of Fellows with substantial experience of medicine and health research and provision from across Scotland and the UK.

The specific questions identified in the consultation document are addressed below:

SECTION 1 - DEMAND AND THE BURDEN OF ILL HEALTH

Under what circumstances might technological progress result in reduced rather than increased demand for health care at least in certain groups. How might it be demonstrated and what account of it should be taken in forming health policy?

It is highly likely that there will be progressive and continuing changes in the demands for healthcare but that it is most unlikely that demand for healthcare will reduce. The view that new developments could decrease the burden of disease on the Health Service was the original concept with which Aneurin Bevan began the National Health Service (NHS). However, it has proved to be unfounded. Improving healthcare, developing new treatments for previously untreatable diseases, with antibiotics for example, has in general changed the spectrum of disease but it does not appear to have reduced the amount. In fact, the public expectation of health benefit is probably higher now than ever before.

In addition, as the population ages the time at which demand for healthcare will become greater will be amongst the elderly in our population and there is every indication that the demands for healthcare will rise as more and more people live for greater years. The demand for healthcare will be in many areas but particularly relating to orthopaedics (hip and knee replacements etc), eyesight, hearing, dementia and degenerative disorders. There is a clear evidence of rising levels of maturity-onset diabetes which will lead to problems of vascular disease leading to the need for treatment of vascular disease either of the heart, the limbs or in other sites.

Demand will fall, however, for conditions whose prevalence and incidence can be confidently predicted to decline over the next 20 years, for example for peptic ulcers secondary to Helicobacter pylori infection.

What steps might be taken to integrate health promotion, disease prevention and clinical medicine and how might such an integrated function be piloted?
Disease prevention and sickness services could be integrated through a long-term commitment to health education. This should start in childhood and be taken out to the community through local networks. In medicine, integration is present to some extent in primary care through General Practitioners (GPs) and their role is important because of their great influence over their patients (for example, in persuading a doubtful mother to have her child immunised with MMR). Many GPs do, however, require better training in disease prevention and the potential benefit of health education. The role of other health care professionals, such as pharmacists and nurses, should also be considered, together with changes in undergraduate/postgraduate medical curricula through the inclusion of multi-professional training.

Thought should be given to piloting schemes where personnel might be jointly trained within a subject (e.g. communicable diseases) to produce the opportunity for better understanding and appreciation of ways to approach the prevention and management of the condition. An integrated planning and monitoring scheme has also been undertaken for heart disease in one or two places in England, under the Purchasing Development Project (Academy of Medical Royal Colleges; 1997).

How best can social services, health care and the education sector link to ensure that requirements for the health of children are fulfilled?
An integrated network of services could be established to target prenatal and pre-school age children and their parents. There could also be support in the community for parents, particularly single parents, making provision for training and retraining of parents in a variety of skills alongside play and education for children. Local multidisciplinary teams involving Social Services, Healthcare and Education might also be piloted in selected areas.

Can tax and other incentives facilitate strong linkages between health care and other sectors? What is the precise rationale of such linkages and what are the implications for academia, industry and government? How best can the potential for health gain be incorporated into public policies across a range of sectors?
An effective strategy requires commitment and participation rather than incentives. However, taxation could be an important way of influencing the linkages between health care and other sectors by giving financial encouragement to promising developments. In terms of the implications for the private sector, it is possible that employers may take account of these factors in assessing the likely future fitness of potential employees so that on the one hand the socially disadvantaged may find their employment opportunities deteriorating. On the other hand individuals who avoid smoking, obesity, and other readily identifiable causes of ill health may enjoy better employment opportunities and this will have an effect on health-related behaviour. It may also have an impact in the area of health insurance with reduced subscriptions for people who take responsibility for their own health. For example in Germany, women who have an annual cervical screen get reduced insurance as opposed to those who do not.In terms of the incorporation of health gain into public policies across a range of sectors, there is strong evidence from several countries, including the UK, that the proportion of total disposable income going to the poorest group of the population has a major influence on life expectancy. There could be consideration, therefore, for some form of "Health Impact Assessment", analogous to the existing Environmental Impact Assessment.

Taking into account trends in science and technology and other changes, for example in demography and population movement, what will the most likely new and expanded demands for health care in the UK be over the next twenty years?
Increasing trends towards longevity, lack of exercise and obesity all suggest that the major expanding health demands will be in the fields of regenerative services (such as bioengineering) and degenerative diseases (such as cardiovascular, orthopaedic and probably dementia). In addition, the increase of stress-related illnesses, antibiotic resistant infections and the expansion of "tropical" diseases into temperate regions due to global warming, food contamination and increasing travel world wide are also issues likely to impact significantly on health. Treatments for conditions, particularly genetic diseases, that are presently considered intractable, using approaches such as gene therapy and stem cell therapy, may also be sought. However, many of today's diseases are likely to continue to cause considerable health burdens in 2020

In relation to likely advances in genetics and other fields how might demands for screening change and how might health care be structured to accommodate these changes in a responsive but orderly way?
It is clear that both molecular and symptomatic screening for those who may be genetically susceptible to common cancers are facing increasing demands and this is likely to extend also to other common diseases with identifiable genetic components, such as diabetes and degenerative cardiovascular disease. Genetic predisposition to disease and of pre-disease factors are likely to become important and the tailoring of treatments to an individual's genetic constitution, initially by screening for genotype at particular loci, may develop. A key consideration will be the ethical problems involved in such screening. These issues are addressed further in the Society's response on Preimplantation Genetic Diagnosis.

The principles that underline decisions to set up future screening programmes remain unchanged: the disease is common and of consequence, there is an effective screening test (irrespective of its nature), and early treatment favourably alters the outcome. The existing and future national screening programmes within the various regions should be co-ordinated and monitored more effectively through a central agency to detect problems and poor performance before these enter the public domain. Demands for screening, however, are likely to increase, with a risk that failure to screen will be perceived as negligence and a need to tackle the ethical question of who is entitled to have access to the information, particularly in connection with medical insurance.

There are impressive technological developments that will make automated screening a real possibility in the foreseeable future, though it is currently difficult todecide where major investments should be directed, since today's technology can rapidly be superseded by faster and cheaper alternatives that require different types of hardware. Nevertheless, the NHS should be prepared to make major investments in appropriate hardware relatively soon. The other essential component is a pool of trained professionals such as clinical geneticists (who need not necessarily be medical practitioners) to advise both patients themselves and their doctors on the clinical implications of genetic information. There is very good evidence now that appropriately trained nurses can fulfil this function effectively and there is a need to expand the number of training courses and provide a proper career structure for these professionals within the NHS.

What steps might be taken to achieve proactive health care and to set in place chronic disease services?
A proactive approach to health care could include relevant screening, prophylactic therapy when available, education of relatives and the general public in dealing with the elderly, and ensuring that people get sufficient exercise from middle age onwards. In addition, there should be a wider range of properly integrated services that cover functions currently undertaken, for example, by the home-help system, residential care and nursing care services.

What will be the social and health care needs of the elderly by 2020 and how might these be met?
By 2020 the social and health care needs of the elderly are likely to be much increased. The relationship between social services and the health services is intimate and the two must be dealt with in parallel. Adequate facilities and resourcing of the care of the elderly (either in the community or in suitable institutions) is a very important provision to ensure that the acute health services are not rendered less efficient than they should otherwise be because of the burden of unmet social needs.

There are likely to be increased requirements for purpose built accommodation, better facilities etc. However, although maintenance of the elderly in their own homes is often the best option, the likely rise of IT support mechanisms and surveillance of old people in their homes may lead to isolation and increasing mental problems. More specialists, psychologists and psychotherapists, community care workers and "friends" will, therefore, be required to maintain mental health and physical independence of elderly people. However, it is possible that by 2020 there will be a pharmaceutical means of either delaying or even preventing the onset of Alzheimer's disease. A more proactive and flexible approach to retirement should also be taken by all businesses.

How might the UK exploit its science base more effectively to take a lead in fighting infectious disease, for example by developing vaccines based on nucleotide and T-cell technology?
To a large extent the UK has downgraded its infectious disease and laboratory services so that it has lost much of the pre-eminence it had in the past. There is, therefore, a need for the UK to devote a higher priority to developing vaccines and to providing the necessary funding. Commissioned research should be undertaken both in universities and by industry, although much of the research into vaccines based on nucleotide and T-cell technology is currently financed by the pharmaceutical industry.

How can the UK build on its track record in public health to ensure that more effective European and wider international surveillance
Infectious disease does not respect national boundaries. International co-operation in surveillance is already quite good, but largely based on informal arrangements. There may be a role for a EU body to co-ordinate the exchange of information within Europe, perhaps with rapid response teams who are in place to both validateand contain outbreaks of disease which threaten to become epidemics. There will, however, be a need to clarify the rules on constructing and using effective healthcare databases, the development of which are presently restricted by the lack of clarity surrounding issues of individual privacy versus the public good.

SECTION 2 - ORGANISATION AND WORKFORCE

In what way might the voluntary sector play a larger and more decisive role in the health care of 2020?
The voluntary sector is likely to play an important and expanding part in promoting awareness of health-related strategies, particularly for prevention and reducing risk, and requires recognition, support and networking. However, its role should be complementary to, and not competitive with, that of the NHS.

Who and how will patients be directed to the appropriate expertise - by health advocates, web-sites, primary care physicians, nurses or support networks of lay people?
Specialisation in medicine has been increasing for 100 years and will continue to do so. There is no reason why the primary healthcare team, including general practitioners and practice nurses, should not remain the key to appropriate direction of patients to specialist facilities. Indeed, the "gatekeeper" role of the GP is an important reason for the relative cost-effectiveness of the NHS. There may, however, also be a role for primary care physicians to use NHS developed/approved web sites to direct patients to the appropriate expertise.

On the basis of current trends professional roles are likely to be transformed over the next twenty years.

What might the characteristics and distinctions between different health professions and between professional and other staff be in 2020?
The Health Service in the United Kingdom has traditionally been manned by a diversity of professions - medical, nursing, scientific etc. Necessary as it is to have the very best of expertise in these various areas of work - and the amalgam of the various disciplines when it works well can produce extraordinarily good results - nevertheless these divisions have occasionally led to rivalry and misunderstanding between different groupings which in turn has led to a diminution of efficiency and effectiveness in the Health Service as a whole. A start seems to have been made to dismantle some of the high walls which surround the various professions. For example, nursing staff now have the opportunity to undertake tasks which were until recently restricted to medically qualified staff.

It is imperative that the work is of the highest standard but by 2020 it is to be hoped that this sharing of responsibilities will have become much more frequent and, even within the different professions, there will be a similar restructuring of traditional involvement of personnel to produce more imaginative and cost efficient health care. The distinction between existing disciplines within the hospital sector, for example, could be blurred by the emerging medical interventional technology with the development of disease-specific multidisciplinary treatment groups covering both community and hospital care. This assumes the need for a triage system, which could well be served by community nurses with the right training. The existing distinction between community, ambulatory and in-hospital care could also be gradually phased out.

The current training programmes of the various disciplines, however, will need drastic revision and this must incorporate multi-professional training. Indeed, it may be manpower shortage that will be the principal driver for the blurring between professional boundaries, rather than technology, given the shortage of students opting for science as a career and the planned expansion of medical places. These changes will therefore require careful management and control, particularly in terms of the maintenance and testing of professional competence.

Might general medical practitioners evolve into community-based specialists and might the generalist role be assumed by nurses and other non-medical staff?
Nurses and other non-medical staff are likely to perform increasingly useful roles, including becoming experts in the management of particular, often narrowly defined, conditions, but this should only be within GP led teams. The generalist role of the GP and his or her ability to diagnose illness across the whole range of medicine and to understand at least the principles of treatment across that broad span are crucial.

Might the distinction between treatment providers and carers become blurred as technologies impact on human roles and shape the delivery of care?
While there is a close link between treatment providers and carers, in practice, there are often different skills involved and some will be more drawn to one aspect than the other.

Might the social aspects of health care become a speciality in itself perhaps with a new cadre of community and possibly hospital- based carers?
A new type of social worker, employed by the NHS and working as a member of the primary care team, could be an attractive idea and pilot studies should be carried out and evaluated.

What will be the education, training and professional development needs of healthcare providers?
To ensure that the workforce are properly equipped to meet the challenges of the future there is a major need for investment in training and learning. There is at present a significant gap between the needs of the workforce in healthcare and what is actually being delivered in practice. This is particularly true in nursing and professions allied to medicine. The provision of training in medicine is better but even there more needs to be done to bring the levels of continuing professional development up to what is needed. The needs for training will also expand as new processes such as revalidation come into place. The single most important issue to address in respect of education and training is the provision of time by senior staff to supervise their junior colleagues as they acquire their new skills. Excessive pressure on the workforce inevitably means that the training function is squeezed out and done less effectively than it should be.

How can the dependence of UK healthcare on imported staff be both justified and managed in the future? How can we ensure that those who come from developing countries receive training appropriate to the needs of the countries from which they originate? How can we make better use of the untapped resources present amongst refugees and asylum seekers who include many health professionals?
The importation of staff to the NHS has produced many benefits to both the service and to the "imported" individual. However, the recruitment of large numbers of doctors and nurses from developing countries raises ethical questions in terms of the precious resources that those developing countries have devoted to training those people, and the need for their skills in their home countries. In order to realise further the advantages of imported staff, and to make better use of the skills of refugees and asylum seekers, there should be a more centralised body to oversee and speed up the validation and appropriateness of the person to a particular post and then to arrange for suitable counselling and training.

Ideally the UK healthcare system should be self-sufficient in terms of staff. This willrequire a re-look at the pool of staff available and improved manpower planning, as envisaged in the Department of Health's recent consultation document 'A Health Service of all the Talents'. Until recently the number of medical school places in the UK has been carefully controlled and the current shortage in medical staff is a result of these (planned) past restrictions. Mechanisms could also be put in place to attract those staff back to the NHS who have been lost to the service so that many more people are encouraged to develop satisfying careers that do not require long-term full-time employment. This would particularly address wastage among highly (and expensively) trained women.

How might productive multidisciplinary teamwork evolve in the future, how might it be mainstreamed in health care and what incentives are needed to optimise skill sharing to deliver high quality care?
Up till now team working has mostly just evolved with some participants being better at it than others. Perhaps the possibility of teaching this aspect of healthcare activities should be explored and multidisciplinary teamwork established by design and intent. Greater priority could be given to teamwork in career progression, which currently depends to a large extent on competition.

What practical steps can be taken to alleviate and prevent stress and what in-built features might be envisaged to ensure that the stress experienced by staff is minimised in future health care?
There are many current sources of stress in healthcare. Many of these relate to the pace of change, the continuous pressure to make cuts in every aspect of the healthcare system, overwork and, to a lesser extent, insensitive management. Advancement in careers is often at the expense of those elements of work which engender job satisfaction. Staff pay and declining public esteem are also serious issues.

A solution would be for more staff to be trained as quickly as possible and, particularly where nurses are concerned, more attention paid to their retention. A confidential support and stress-reduction network may also be helpful.

Where should progressive leadership come from and how should it be developed?
Leadership has to come from the top, including the General Medical Council, the British Medical Association and the Royal Colleges. In addition to identifying individuals who have already made their mark in the health service in the UK, goodprogressive leadership could be sought in areas of excellence in other countries, such as the United States, with excellent individuals invited to manage healthcare in a particular area of the UK and to train the next generation of leaders. Once appointed there should also be continuous professional development at the highest level.

What steps are needed to achieve interpersonal and listening skills and what lessons might be drawn from the commercial and other sectors?
Interpersonal skills need to be developed through education at school, and during medical and CPD training. However stress and high levels of job pressure will act as obstacles to their development. Where there is chronic under-manning, extra training is seen as an irrelevant luxury.

Adaptability and building linkages between disciplines will be essential futurerequirements. Is there an emerging role for the intellectual generalist?
Discipline-hopping initiatives will encourage scientists and, possibly doctors and other healthcare workers, to acquire expertise in different fields and such staff will be well placed to guide future developments. Improved communication and teamwork between specialities, however, will still be the key. One deterrent is that staff see better promotion prospects within a narrow discipline rather than in a general field.

What safety systems will be needed in the future? How should these be designed and introduced with appropriate incentives to make them work?
There should be ready acknowledgement that healthcare systems are never perfect. The occurrence of errors should be openly acknowledged with earliest steps taken to put the problem right. Centralised systems of incident reporting, mortality reviews and patient complaints would identify problems at an earlier stage, together with more effective audit of admissions, diagnoses and discharges. There should be a team approach to identification and rectification of less than ideal practice. This will help to reduce the present blame culture and encourage early identification of weaknesses. The public should also be better informed about the balance of risk versus benefit and consideration should be given to produce a no fault scheme of compensation when complications arise.

What applicability might incentive structures for optimising the results of health care and other approaches have in health care?
While the health care system should always be keen to learn from other organisations care should also be taken to see if the methods used are appropriate in the medical setting.

What are the arguments for integrating health and social care, what are the obstacles to achieving integration, and what issues does this raise for funding and regulation.
The integration of health and social care in Northern Ireland (necessitated by the absence of elected local authorities) has produced better community care, and fewer boundary disputes, than in the rest of the UK. Lessons should be learnt from this and the potential benefits of innovative and flexible combinations of services are immense (see the report of the Royal Commission on Long Term Care for the Elderly). It is important, though, not to create a new boundary between social work and housing which would be almost as damaging as the present boundary between healthcare and social work. The flexible combination of services could be facilitated by the appointment of persons with a liaison responsibility.

How might future health care information requirements be developed through a balance of central policy and local strategies and initiatives?
For many diseases (including cancer) it is important to convey lifestyle information as early as possible and the involvement of health professionals and bodies such as the Health Education Board for Scotland (HEBS) with the schools curriculum will aid this, although beneficial consequences are unlikely by 2020.

Most Information Technology (IT) initiatives in the healthcare environment, however, tend to be problematic. Manufacturers are often very cautious about being involved in NHS IT systems as they perceive that requirements are often poorly specified and there is inadequate project supervision. There is also the fundamental issue related to the difficulty of transferring medical data to computer in a reasonable time, and the quality of the raw data due to entries being made by unqualified, poorly paid and over-stretched clerical staff. In turn, this relates to salaries and the level of resource available.

What are the main challenges and opportunities for healthcare systems presented by the internet revolution and e-commerce?
The internet will have undoubted power in conveying information but quality control of this source is vital and the internet is unlikely to achieve high penetration amongst the population who will present a particular burden in 2020, those currently in the 55-70 age range. On a more positive vein, centralisation of many services could be undertaken. Already, for example digitised recordings of electrocardiograms can be transmitted from anywhere on the internet within a short period of time to a central facility and interpretations returned within hours, having been checked by a qualified individual. Similarly, internet-based services for storing patient records remotely are now being introduced in North America so that small hospitals do not have to cope with running a large computer system.

What will be the health information needs of clinicians, patients and the public and what are the barriers to meeting these needs?
It is likely that clinicians will undertake ward rounds and be able to check out information on-line to assist with diagnosis and treatment. This approach, which is already being piloted in Glasgow, can be expected to grow. In the future, patients may also carry their own stored data including scans and therefore will be able to benefit from drop-in healthcare centres more readily. The IT revolution has, however, a risk of depersonalising the service while making it more efficient.

With the tremendous advances in information technology much more attention needs to be given not only to the training of the users of the information but also to those providing it so that the information is as user friendly as possible. In terms of data protection, the stance of the European Parliament and of the Data Protection Registrar is that personal information about patients can only be used for purposes other than their care with their explicit permission, and only for the purposes for which they have given permission. If measures are not introduced to address this, it could potentially pose a serious threat to clinical audit, clinical governance and many types of research.

Between 1948 and 2000 there has been a consensus that UK healthcare should be financed collectively for all the population and distributed according to need. Is this line of reasoning valid or does it reflect attachment to an outmoded concept?
In general the line of reasoning is valid but it needs to be modernised for a modern society. Modifications to the health care system will inevitably continue to happen but a national health service should be the basis of one of the anchor stones of the UK infrastructure to which adjustments can be grafted.

While some form of private-public partnership, with the State retaining final responsibility for equity of access, seems possible, it is certainly true that the structure and financing of the NHS is a great advantage in the planning and delivery of preventive medicine. It is equally true that until the last decade or so these advantages have not been properly exploited.

How might healthcare be funded in 2020, and might there be some convergence of funding methods across the EU?
It is true that the UK is unusual in financing so high a proportion of its total healthcare costs from public funds. A single structure like the NHS does, however, have inherently lower administrative costs than the continental insurance-based systems. The common continental approach, however, of joint funding from taxation and private insurance contributions seems reasonable for those who can afford it and would go some way to mitigating the cost of an increasingly costly NHS.

What are the prospects for employers contributing in different ways to healthcare and what could be incentives for this?
Initiatives such as the smoke-free work place have been important in this regard and the emphasis for employers should shift away from mere safety of staff towards a positive attitude towards health. Provision for rest and relaxation, for exercise, for healthy eating, for enlightened allowance for leave for care of geriatric dependants as well as child minding, flexible working and proper preparation for retirement might be some ways in which employers could contribute indirectly to healthcare and possibly result in higher productivity and greater employee satisfaction.

What will be the nature, magnitude and impact of health inequalities in 2020 and what are the drivers that will increase/decrease these?
In most respects the NHS does provide equity of access and that is one of its great achievements. It is important to recognise, however, that no system of healthcare is likely to provide equity of outcome, for outcomes depend on a wide range of interacting economic and social factors. The most important of these is probably the distribution of disposable income in the population.

In addition, the utilisation of technologies such as the internet, the web and other sophisticated methods of communication will mean that the well educated may have the means to access health care which might not be used by the more disadvantaged who find these new methods less available and less suitable to meet their needs. Modern methods of communication may, paradoxically, be a major factor in widening even further the healthcare gap that we see at the present time.

How might the needs of complex multi-ethnic communities be met?
Language barriers are particularly hard to break down in older people who are not native English speakers, therefore schemes which educate parents alongside their children, in school and in a variety of languages particularly English, are a significant step taken now towards prevention of these problems in 2020. Along side this, however, specialised liaison officers could be considered in particular areas.

What steps might be taken to exploit the opportunities for integrating Telephone and internet-based advice, and walk-in and work-based clinics into existing systems and avoiding potentially undermining effects?
Walk-in and work-based clinics could work significantly to reduce dissatisfaction with the health service and to provide a more efficient healthcare system, while maintaining work attendance and efficiency. Care would be needed, however, so that they do not lead to a disruption of the relationship of the patient to his family doctor. Patients might also carry their own IT-based records which duplicate a centrally stored system.

With regard to internet-based advice, NHS direct on-line has made an impressive start. However, other currently unregulated "health advice" internet services are of extremely variable quality and some form of accreditation and approval system should be put in place.

What are the barriers to 24-hour services as a permanent in-built feature of health care?
24-hour services are obviously essential for medical emergencies and to provide adequate care for people who are critically ill. Their provision will, however, be expensive and place great demands on clinical staff, particularly doctors and nurses. 24-hour services could, however, maximise the efficient use of high-tech facilities such as imaging and operating theatres. The difficulties with such 24-hour usage may arise due to possible diurnal variation not only in the energy of healthcare staff but more subtle parameters in the patient such as cyclical neuroendocrine and immune functions.

Is this a future in which clinical decisions are supported by intelligent systems a feasible future picture and if so what might the hospital including the teaching hospital - of 2020 look like?
It is possible that we will move in the direction indicated but probably at a much slower pace than might be envisaged, with availability of manpower being a significant factor. It could, however, lead to a much more highly selected in-patient population and an increase in specialist day-treatment services. The movement of technology from the hospital to the community clinic will also raise the problem of who supports it, in terms of monitoring the quality of the output (both staff and equipment), ensuring that it functions well and provides updates as required.

SECTION 3 - PATIENTS AND PUBLIC

How might the future patient-professional "contract" or relationship develop and what could be done to take advantage of changing technologies and attitudes?
It should not be assumed that the internet will necessarily educate the whole population. However, there will certainly be a cadre of very well informed patients whose opinions and knowledge should be respected. There will also be subsets of patients who are misinformed but vociferous in their demands. The patient-healthcare professional contract should therefore continue to involve a degree of trust together with an attitude of openness and acceptance by both doctor and patient that it is impossible to be familiar with all available data. Properly integrated multidisciplinary primary healthcare teams could also assist these developments.

One of the problems with current practice is deterioration in the continuity of clinical care which is inevitably detrimental to the individual patient, as it is ultimately the individual responsibility of the healthcarer that protects the patient. The shortened working hours, shift working and diversification of responsibility anticipated in the Foresight document could have potential harmful consequences on such continuity. On the positive side, while consultations may not be face to face, IT contact may improve continuity of care during travel or other circumstances.

How will systems and roles develop to promote the empowerment of individuals and communities encouraging local networks and local solutions?
Public understanding of healthcare issues, information and education all require a variety of strategies. Mainstream education at all stages of life remains important but less obvious ways of imparting messages have proven effective, such as storylines in television "soaps", popular magazines and role models amongst sports stars. Self-care must be promoted through schools and work places but is likely to be kept up only when the health benefits are appreciated.

Will specially skilled staff be needed to advise on genetic information, to assist with patient choice and the selection of interventions?
The demands for screening services may rise exponentially as understanding of the genetic basis of disease becomes clearer. The early experience from genetic screening for breast and ovarian cancer has shown that the genetic information creates huge levels of anxiety amongst potentially affected individuals and the demand for expert and sensitive screening is very large. It will be important to recognise this need clearly and to train suitable individuals, who need not necessarily be medically qualified, with the skills to advise on a number of areas where genetic factors predispose to disease. In addition, GPs and all healthcare staff will require some basic training in answers to the common questions. It is vital that the quality of the screening operation is maintained at a high level and regularly maintained.

What incentives and mechanisms might be set in place to attract public interest in scientific and technical issues and to encourage clinicians and scientists to become actively engaged in public discussion?
Public interest in science should be engaged at the level of school by making science accessible, interesting and fun. Public enterprises, such as science centres, which attract children and adults together are likely to be particularly successful. Again, television and popular magazines and newspapers are important ways of contacting the public. Clinicians and scientists have traditionally been wary of engaging in public discussion as they lack the training and the time to do this and there is some justifiable concern about adversarial journalism. Training for engagement in public discussion should, however, be part of medical education and team briefing in healthcare. Novel voices and talent may be discovered and doctors should not assume that they are best at communication or closest to patients. These issues are addressed further in the Society's response on Science and Society.

SECTION 4 - RESEARCH, DEVELOPMENT AND TECHNOLOGY

How might universities and research councils respond to the challenge of interface innovation?
It is well known that fundamental scientific advances are often the result of the application of the technologies or concepts of one science in the territory of another. The Research Councils are already keenly aware of this and have many interdisciplinary initiatives under way. In addition, in most research-orientated universities, single-subject departments have already been replaced by multi-disciplinary research groupings. Universities do, however, have a problem in developing interdisciplinary research in the confines of the categorisation of the Research Assessment Exercise and this needs to be addressed.

Interface innovation could be further supported by providing a flexible environment that fosters natural collaboration rather than imposing pre-judged ideas of which interfaces are likely to be most productive; by providing interdisciplinary courses or course combinations for the next generation of students; by provision of lifelong learning programmes where those with expertise in one field can acquire new expertise in a complementary one; through the establishment of discipline-hopping research fellowships and through sabbatical leave for senior staff to facilitate interface innovation.

It would be helpful if each of the foresight panels could identify two or three hot topics of greatest relevance to health care within the scope of their review.

Potential topics of greatest relevance to healthcare could include:

• the identification of effective and safe means of preventing and stopping the addictive habits of alcohol, cigarettes and drugs;
• the genetic predisposition to cancer and strategies to prevent cancer;
• tissue engineering, medical biomicrosensor systems, medical microrobotics, intelligent drug delivery systems and disability aids;
• computerised image analysis techniques for screening (e.g. in cervical smears and mammography);
• healthy ageing;
• genomics to proteomics (the cell factory);
• food safety, nutrition and environmental health;
• brain development, maintenance, repair and ageing;
• screening (either for genetic disorders or pre-symptomatic disease); and
• attitudes to termination of life.

There is a clear tension between encouragement of industrial innovation and resource control through barriers to the entry of new technologies into healthcare. What steps should be taken to resolve this in the longer term?
A new technology should only be introduced if it has been proven to be clearly beneficial and cost effective. However, the NHS is taking some steps to encourage the introduction of new technology through its New and Emerging Applications of Technology (NEAT) initiative. The financial problems represent the most significant barrier to the clinical testing of new technology internationally.

Technology transfer should be removed from university administration and developed through an organisation that understands technology and how to handle, manage, package and market it. Are these realistic and desirable options and if so how might they be set in place?
The role of the British Technology Group (BTG), and its predecessor, has been crucial in ensuring that British intellectual property has been protected, as on their own, universities do not have the financial power to protect patents. This is an important element in technology transfer and the panel could explore what can be offered through BTG. Overall, the success of universities in technology transfer has been patchy, often the problem being lack of adequate resources and the inability torecruit staff at competitive rates. On the other hand, local groups know what is going on within their own institution, be it a university or a hospital, and are more able to identify opportunities and give encouragement to potential projects. The concept of an Applied Research Council is marginally attractive, but funding is not the only issue and the breadth of its remit would mean it would be difficult for it to command the expertise required across the whole range of the biological and physical sciences and engineering. There would be considerable resistance now to removing technology transfer from the control of the Universities particularly if financial benefits are likely to accrue to the Universities from present structures. An alternative could be to provide applied research panels within existing Research Councils.

What steps are needed to sustain the UK healthcare sector in a competitive global market, to maintain the UK’s strengths in clinical research and to prevent a move of trials and industrial R&D away from the UK?
Regulatory burdens are escalating and a balance needs to be struck between freedom to undertake research and the necessary constraints around it. In this context, the need for the Home Office to streamline the handling of proposals for animal research, without prejudicing animal welfare, is currently receiving attention. Regulation, however, is not necessarily bad. In the field of drug regulation, the U.K. is looked on as a strict but fair regulator and companies are encouraged, rather than discouraged, by this. If regulation is seen to be excessive, or badly managed, then this will act as a negative incentive.

In this area, vocal pressure groups are, however, influencing the agenda, and while much of this is responsible and of proper concern (e.g. prevention of suffering in experimental animals, illegal retention of organs), there is also some risk of tabloid journalism and public misunderstanding constraining future research. The most visible effect of this may be to drive commercial enterprises to undertake research abroad. There is a less visible effect of simply deterring many individual researchers who give up and take a much lower research profile than they would otherwise have done.

Other important issues include: the need to simplify the processes of ethical approval, particularly for large, multicentre clinical trials; the lack of large multinational companies in the UK capable of marketing medical products, and the need for institutions to moderate the overhead costs they apply to clinical research.

How might repair and replacement services evolve and what is the most realistic assessment of their scope in relation to ageing, chronic disease and injury?
Within the normal lifespan of an individual as we currently understand it, most ill health is caused by individual parts of the body wearing out, being injured, developing abnormal growth patterns or initiating inappropriate immune reactions, asynchronously with the rest of the body. Successful ageing might well entail transplants, targeted immune wipe-out, tumour eradication or infection control. By 2020, it may be possible to harvest and bank currently discarded birth tissues, for example from the umbilical cord, to serve as a later source of stem cells for manipulation. In a separate approach, interface research may allow chemists or engineers to deliver novel non-biological, non-allergenic materials for use in transplant surgery. Physics and microbiology may provide novel mechanisms and delivery systems for targeting subcellular components which require eradication. Such developments are feasible and of enormous relevance to ageing, chronic disease and injury. These issues are addressed further in the Society's response on the Chief Medical Officer’s Expert Group on Cloning.

In anticipation of the use of animal organs (xenografts) for transplantation into human subjects, how best might the public, professions and government work together to define acceptable risk in relation to need?
The issue of xenografts is pressing because it is the closest to realisation and presents, through the unquantified risk of endogenous viruses, a possible conflict between individual benefit and community risk. The current climate of public opinion, reinforced by media concerns, is not propitious for the exploitation of ethically sensitive research. As in the case of general healthcare issues, public education can only be beneficial and this should be a priority. This issues could be further developed by the UK Xenotransplantation Interim Regulatory Authority and are addressed further in the Society's response on Animal Tissue into Humans.

Is the concept of an NHS Clinical Research Organisation feasible and if so what might its functions and mode of operation be?
The notion of an NHS clinical research organisation is an interesting one and should be considered. However, there is currently a danger of an increasing split between NHS and university based research. The status of NHS research needs enhancing and this kind of role would command respect. A similar concept has been considered by the House of Commons Science and Technology Committee Report on Cancer Research, which examined the feasibility of establishing a National Cancer Institute. The conclusion, which is equally applicable to a Clinical Research Organisation, is that such a body is desirable, and should be real rather than virtual but should not be based on a single site. The concept of a Clinical Research Organisation concentrated in a number of centres of excellence seems feasible but the corollary is that NHS R&D funding should be provided directly to the organisation.

Given the current burden of mental health problems and social and scientific trends what form might comprehensive community and hospital-based mental health care take in two decades time?
Mental health problems cannot be considered in isolation either in hospital or in the community. Greater understanding of the pathogenesis of these conditions, and the contribution of genetic, developmental and environmental factors, should focus mental health care on early intervention to reduce the burden of severe illness. At present, there is considerable pressure both from government and from the user movement to make the treatment of mental illness an exclusively community based discipline. There is a great risk in this of cutting psychiatric services off from developments in the neurosciences with crucial implications for diagnosis and treatment. It is already clear, for example, that several forms of brain scanning are going to be capable of providing information that is likely to be essential both for diagnosis and the monitoring of treatment within the next 20 years. The complexityof the potential advances in the prevention and treatment of neurological illness would seem to point towards the formation of multidisciplinary regional services to oversee the management of these advances. Education should also continue to prevent the fear and stigma associated with mental health problems.

What action should be taken in the short term to place the UK in a lead position with regard to the longer-term benefits of genome research?
The exploitation of post genome technology is likely to come from larger organisations like Government research units or pharmaceutical companies, and will inform the assessment of individual disease risk. However, particular discoveries regarding individual genome targets will be within the province of smallfocused research groups. One initiative that central policy could take would be to identify the likely deficiencies in progress where gaps in information might occur. However, UK could also concentrate resources in areas of strength, such as the understanding of proper multi-centre trials and meta-analysis both on a UK and European front. European networks will certainly be required for rare diseases and liaison with European Union research networks would be beneficial in this area.

In the short term, action could include: increasing the level of both targeted and response-mode funding for research in this area and in related interdisciplinary areas; enhancing skills in bioinformatics and whole-cell biology, including structural molecular biology and ensuring that the public is made aware of the benefits that can be accrued.

What are the barriers to efficient, appropriate use of Human Genome Data?
Possible barriers include: patenting of sequence information; the need for development of, and access to, appropriate information technology; scarcity and cost of research equipment; adequate research manpower; ethical issues relating to access to individual's genome data; public resistance to research and the need to develop efficient, safe, cost-effective gene therapy procedures.

Theoretical barriers to efficient use of human genome data relate mainly to interpretation of gene interactions. While moving from the genome to the proteome should be a rapid process, benefiting from the same bioinformatics power as was applied to the Human Genome Project, understanding the interactions of proteins inprocesses at the whole cell level will probably be a tougher task, yet it is one that must be achieved to acquire precision in treating disease.

In addition, in order to creating datasets of human genomic material in relation to clinical syndromes and presenting problems, there will need to be outcome data of an individual's clinical ill health. However, while relevant clinical information may be available at the time of creating a dataset, its full use will require updating, raising problems both in terms of confidentiality and the manpower to log clinical outcomes.

Since a particular hope is that identification of those susceptible to specific health problems such as heart disease, cancer and diabetes in later life will lead to effective preventative strategies, what steps should be taken to launch large scale population studies?
Large scale population studies are already underway in some areas and this trend should be encouraged by funding bodies, although proposals in this area should still be in competition with other research proposals in order to ensure that the best research is funded over the whole spectrum. To ensure best use of large patient cohorts, it will also be important that there is a coherent national approach. Financial incentives to publicise the existence of data sets, patient cohort groups and genetic information may help.

What will determine the likely impact of Human Genome R&D on Healthcare in 2020 and who will determine the need for post-genome technologies - pharmaceutical companies, government, professionals, the public or patients?
The impact of the Human Genome research on healthcare will be determined by a combination of pharmaceutical companies, government, professionals, public and patients and there should be regular ongoing dialogue between these groups.

The collation and use of genetic data raises ethical questions which need to be addressed promptly. As part of this it is important to ask whose ethical agenda is it, who sets the rules for the majority, and how might the dissimilar views of different groups be reconciled?
Consideration of bioethical questions has a high profile, and while this is right and proper, there appears to be too much diversity and arbitrary ruling in the hands of local research ethics committees. More general and widely available writing on ethical issues, together with guidelines for best practice, are to be welcomed and less burdensome ethical boundaries might be considered. In the UK the legal position is vague because there have been few test cases. The situation is likely to be clarified only once some tangible benefit from the collation and use of genetic data has been demonstrated.

How might society be divided by genetic information?
Society should not be divided by genetic information and biodiversity should be accepted and welcomed as part of the richness of human existence. However it is inevitable that in the future some degree of genetic selection will be employed by parents anticipating the birth of their children.

How might the NHS in partnership with the universities and industry stimulate the development of new methodology appropriate to post-genome research and analysis?
The NHS should assemble a task force, together with a suitable funding budget, to commission appropriate research and new methodology.

Additional Information
In responding to this inquiry the Society would like to draw attention to the following Royal Society of Edinburgh responses which are of relevance to this subject: Animal Tissue into Humans (April 1997); Consent and the Law (December 1997); Cloning Issues in Reproduction, Science and Medicine (April 1998); Review of the Common Law Provisions Relating to the Removal of Gametes and of the Consent Provisions in the Human Fertilisation and Embryology Act 1990 (April 1999); Science and Society (June 1999); Chief Medical Officer’s Expert Group on Cloning (November 1999) and Preimplantation Genetic Diagnosis (March 2000). 
Copies of the above publications and further copies of this response are available from the Research Officer, Dr Marc Rands 
 
September 2000
 
 

Further information is available from the Research Officer, Dr Marc Rands