THE CHARTERED SOCIETY OF PHYSIOTHERAPY 14 BEDFORD ROW, LONDON WC1R 4ED TEL Fax

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1 THE CHARTERED SOCIETY OF PHYSIOTHERAPY 14 BEDFORD ROW, LONDON WC1R 4ED TEL Fax Review of UK Health Research Cooksey Review INTRODUCTION This response comes from the Chartered Society of Physiotherapy (CSP) in consultation with the CSP s Research & Clinical Effectiveness Group and its members. The CSP welcomes the opportunity to comment upon the proposals. The Chartered Society of Physiotherapy (the CSP) is the professional, educational, and trade union body for the UK's 45,000 Chartered physiotherapists, physiotherapy students and assistants. It aims to support its members and help them to provide the highest standards of patient care. The majority of our members work in the NHS, but a significant proportion is employed in independent hospitals and higher education. Our members also work for charities, in residential homes, sports clubs and in private practice. Around 98% of qualified practising physiotherapists are members of the CSP. Physiotherapy is the largest allied healthcare profession in the UK. Physiotherapy is keen to develop its knowledge base and to build capacity within the profession. The CSP welcomes a single research budget that utilises all the strengths of the current funding programmes, enhances strategic planning and provides a more efficient streamlined process. A challenge will be to combine the respective strengths of the programmes without losing important areas and to ensure that the end result of health research funding is - more effective patient care and health promotion. The review is asked to note the need to ring fence money for training /capacity development and to address current inequalities facing AHPs. Review questions and response 1. What are the strengths and weaknesses of the MRC and NHS R&D programmes at present? How do each of these support the research and training needs of the NHS, social care, industry and academia? Does more need to be done? The funding provided through these organisations aims to create a strong research environment in the NHS and support the UK as a leader in health research. There is a perceived strong bias towards bio-medical research in established/traditional universities, more so with the MRC programme than the NHS R&D programme.

2 Although the DH has recognised the importance of research informing practice the MRC programme is perceived to have a bias towards funding science based research that does not inform health care at the point of delivery. If health care workers are to demonstrate that their practice is evidence based then more support needs to be provided for research into day-to-day practice, both in terms of funding and developing the necessary skills. Again this is particularly needed for the AHPs. There continues to be a lack of support for professions other than medicine. The previous ring-fenced funding through the NHS R&D personal awards went some way towards resolving this issue but not far enough. Ring-fenced funding should be re-established for a number of awards, not just the personal award schemes. Career development pathways also need to be clearly identified for all health and social care professionals carrying out research, this is being done for medics and nurses but not AHPs. Fellowships (including junior awards) require a significant degree of research experience, often unrealistic for many capable junior staff. In the past the awards have not created clinical research capacity, particularly in non-medical research in the NHS. The strengths and weaknesses of both programmes have been clearly summarised in a recent paper in the Lancet, Horton R (2006) MRC strengths Basic science research, discovery research, innovation, technology, translational research, exploiting intellectual property. International medicine, global health, supporting less advantaged countries Patient involvement (James Lind Alliance) Very successful at assessing and administering research MRC weaknesses Although MRC has increased its commitment to clinical research (during past 3 years, clinical research spend increased by 80%), it has still not yet achieved an optimum balance between clinical research and basic science. Currently spends about 30% of overall budget on clinical research. MRC has also indicated a commitment to increasing the research capacity of AHPs/ funding AHP related projects but there is little evidence of this is practice yet. Whilst the majority of MRC funding programmes are open to AHPs, it is very difficult for AHPs to break into their funding programmes. Barriers to AHPs accessing MRC funding need to be considered. There is also a need for greater AHP representation on MRC Boards. There are few opportunities for nurses and Allied Health Professions (AHPs) to secure funding independently through the MRC unless they provide technical support to the medically based research question. NHS R&D strengths Large proportion of budget provides infrastructure support for all clinical research (including MRC funded projects). Also training, dissemination, governance and ethics Worlds most important funder of systematic reviews Clinical research networks particularly important for recruiting patients to trials 2

3 Important programmes research capacity development, service delivery and organisation, methodology, INVOLVE, Cochrane Collaboration/Centre for Reviews and Dissemination, links with NICE NHS R&D weaknesses Relatively small proportion of budget invested in primary research/clinical research. Risk of funding being lost in service delivery rather than research Lack of AHP and nursing representation on funding committees and review panels Research capacity development strongly biased in favour of doctors, capacity issues for AHPs and nurses still needs to be urgently addressed Training needs of NHS and academia If the single fund is really going to support health research rather than exclusively medical research, the importance of addressing the training needs of all health care professionals must be a priority. Capacity development programmes The specific issues around research capacity for AHPs and nurses has been acknowledged for some time. However, AHPs and nurses remain hugely disadvantaged in accessing capacity development programmes. There are a number of reasons for this, including, lack of suitable supervision and support, lack of research leaders with relevant subject expertise, in particular with a track record of MRC funding. Lack of research time/resources to produce high quality applications, low success rates perpetuates the perception that AHPs will not be successful, lack of representatives on relevant programme boards with understanding of AHP related research. More support is needed to encourage AHPs to apply for funding and ring fencing of funding for AHP and nursing research capacity building programmes Clinical academic careers The recent drive to train and support clinical researchers is welcomed. However, to date funding has only be provided for doctors and dentists. The needs of the nursing profession is currently being reviewed. It appears that funding for the development of research careers for AHPs is not available. Such inequalities amongst health care professionals must be urgently addressed. There is huge concern that AHP researchers will become increasingly disadvantaged, in particular in relation to the developing NIHR Faculty. The vast majority of AHP researchers are funded through academic posts and this needs to be taken into account when setting application criteria for all funding programmes. 2. What do you believe are the key scientific and organisational challenges facing health research, and underpinning training, in the UK over the next decade? How might the UK Government best help address those challenges? What do you believe should be the Government s objectives for health research, and why? Challenges i) The revised ethics process has become a major disincentive to conducting clinical research. This is compounded by many scientific journals requiring 3

4 ethics approval for submissions involving human participants. Whilst upholding the rights of the individual this prohibits the publication of audit cycles. For many nurses/ahp s engaging in audit is the first step to a career in research. ii) Lack of funding to collect pilot data. Local NHS R&D department budgets have been withdrawn. iii) Undergraduate students, in the past, would engage in clinical research for a number of weeks to complete their dissertation. This would be an accessible route for the collection of pilot data. Currently students rarely complete clinically based dissertations. iv) The interface between universities (academics) and clinical researchers is poor. A system that supports partnership working and therefore encourages the growth of clinicians as researchers would be a way forward. \this is happening with clinical academic posts but as yet there have been no opportunities for AHPs. v) If clinical research is to be developed the NHS organisations need to foster the local research culture across all disciplines within the NHS. vi) Incentives need to be provided for health professionals to engage in research. At present, professions other than medicine, have little incentive to engage in research either by becoming academic researchers or ensuring that research findings are implemented appropriately. Incentives should include better pay, career prospects and job security. - key challenge adapting to constantly changing priorities. Especially in relation to organisation NHS restructuring / changing service delivery - To ensure that all high quality health research is disseminated and implemented in practice Engaging fully with all health professions will be critical in progressing this work and representation should be sought from all of them. AHPs have recently raised this as an issue in the implementation of Best Research for Best Health; the NIHR Advisory Board only contains a representative for Nursing & Midwifery and has no representative from the AHPS. The Governments objectives for health research should be expanded and the research themes should reflect the current and projected challenges to the NHS. The Government needs to focus on the implementation of research findings at the point of health and social care delivery. How to address challenges need to ensure flexibility in systems to respond to ever changing priorities clear strategic planning and horizon scanning 3. What should be the Government s priorities for health research? Is there anything it should stop doing or funding? What is it not doing or funding that it should do, and, in the absence of further sources of support, what can it lower in order to release the necessary funds? The priorities should relate to the major health and social care issues [primary - care, mental health, public health and community and social care] challenging the 4

5 NHS now and in the future. Epidemiological studies are necessary to forecast demand and align funding streams. Public health research has to be a major priority The research should involve all health professions and not necessarily be led by medicine. It is essential that the large majority of research is patient focussed aimed at improving patient care. There should be clear communication with other grant awarding bodies to create an overarching funding structure. It may be possible to reduce support to areas that are likely to receive alternative funding. However, this would need to be carefully monitored, as it is likely to change over time. Clear strategies / co-ordination between all funders is key so that there is no overlap. 4. How should decisions be taken on the balance between the long-term economic and social benefits of a high quality biomedical research base; and the needs for research to improve healthcare and other public services? What is the appropriate balance between public funding for investigator-led and priorities led research? How do we balance funding for basic science, translational science and applied science? Is this something that should vary over time? What mechanisms should be used to make judgements about this balance? Balance of research The immediate economic/ social burden of disease should drive clinical research, to have an immediate and obvious impact on the patient and society. Clinical research is frequently perceived as the poor relation to basic science research. It is important to raise the profile and credibility of clinical research, over and above industry sponsored clinical research. If all of the Health Professions are to develop their evidence base it will be crucial to continue to seek their views and support their development. The potential long-term economic and social benefits of any high quality biomedical research programme must be apparent from the outset including how this will eventually translate into healthcare. The balance will vary over time but data from the recently published UK Health Research Analysis (UK Clinical Research Collaboration, May 2006) suggests that an appropriate balance has not yet been achieved. Approximately one third of research activity is underpinning research, one third aetiology compared with 2.5% prevention research, 8.5% treatment development, 8.1% treatment evaluation and only 2.3% disease management research. Sub analysis of the research activity codes shows that only 0.3% of funding for development of treatments is for physical treatments which is less than 0. % of the total spend. IN relation to evaluation of treatment, 0.4% of the total spend is for evaluation physical treatments. Balance between investigator-led and priorities led research The balance depends on a number of factors how priorities are determined, how quickly they are adapted to ever changing health needs and to what extent they take into account different geographical needs. Investigator-led research is 5

6 important provided a clear clinical need is demonstrated and there is some overall mechanism for co-ordinating research projects and programmes. Patient / user involvement in investigator and priority setting exercises is essential. Balance of research will evolve over time. Mechanism to review previous funding matched against current clinical priorities. Economic evaluation of research should have a higher focus in any award. 5. In your experience, how have the results of publicly-funded health research in the UK been used, both in the development of new treatments and to influence / change wider policy and healthcare practices? What lessons can usefully be learned to improve the uptake of advances in science and medicine? Research translated into practice The government should support the provision of evidence-based health care. This means supporting staff [all professions] accessing the evidence base and providing necessary skills through training. Ensuring adequate resources for all health care professionals to access the evidence. There is an inevitable lag time for research to be synthesised by clinicians. For clinically based AHP s/ nurses there is little opportunity/support for initially identifying research studies. Furthermore critical appraisal skills need to be developed. The most apparent mechanism for implementing research in to clinical practice is through NICE guidelines. NICE guidelines are a successful mechanism but often do not contain the level of detail needed to guide individual health care professionals in their daily clinical practice. It would be useful to consider the recommendations and key messages identified in the final report of the NICE stakeholder involvement project (2004). This report identifies the need to engage in a debate about how to enhance the relevance and therefore usability of NICE guidelines. Continued research is needed into effective implementation of guidelines Funding by health care commissioners should be more evidence based, with continual review of new initiatives. Funding for non-evidence based initiatives across the health care community is a huge disincentive to clinical researchers and rewards unethical practice. It does not encourage an informal evaluation of the service beyond numbers of patients that have accessed that resource. Better communication between researchers and commissioners is needed. Adequate funding is needed for health service / service delivery research and researchers need to ensure that they addressing commissioners priorities. Funding for training commissioners in how to access and evaluate the evidence. Research funders should actively promote open access to research findings; the recent commitment of the research councils to this is very welcome. Research networks can be used to improve the uptake of advances in science and medicine 6

7 6. How might better links be forged between basic, translational and applied researchers, working across the whole field of health research, from the laboratory bench to the front line of the NHS? How might better links be forged across disciplines, e.g. with engineers, physicists, and social scientists? Policy driven funding needs to be directed at forging links between academic units and NHS departments/clinical research centers. Mapping existing facilities and links would be a useful starting point. Incentives should also be put in place for collaborations to be developed between the NHS, universities and industry. Opportunities should be created for NHS/social care staff to work within universities and for university staff to work within the NHS as well as social care and community settings. These posts need to be of long enough duration for outcomes to be produced and the resultant benefits to be evident. This is likely to improve links but at present it is only really successful within medicine. It is essential that these opportunities are made available to a wide range of health and social care professionals. I.e. flexible clinical academic careers Many AHP s/ nurses work as part of a multi-disciplinary team, usually this is in silos defined by the organisation. Within the NHS it would be unusual to have research active personnel across the spectrum. Therefore cross collaboration is required. This can be initiated by local networks of researchers in universities and health communities. These groups do exist and should be actively supported/ encouraged by both organisations. These are usually exclusive to active researchers and the challenge is to enhance research capacity across the disciplines. Ensuring appropriate representation of all disciplines and patients/users in research networks; on funding boards and review panels and developing links between the research councils and possibly providing joint funding opportunities could also help. 7. How can the Government encourage translation, entrepreneurship and innovation in health research to improve public services in the UK? NHS R&D and MRC have good programmes to support entrepreneurship and innovation NHS R&D research for innovation, speculation and creativity (RISC) project scheme and invention for innovation programme. MRC MRC Technology intellectual property rights, early stage ideas progressing to the market place, knowledge-transfer revenue, commercial and licensing income Government should continue to develop collaborations with industry encourage Forums / networks between industry and researchers. Translational research is recognised as important by the MRC and should be encouraged 8. How can UK health research funding be most effectively used to provide the appropriate infrastructure for basic, translational and applied research, whether funded by the UK public sector or other sectors? How can UK health research funding be most effectively used to support the work of NICE, facilitate innovation and collaboration with industry, and address market failures in the application of healthcare? Essential that adequate infrastructure support for both researchers and all healthcare professionals. 7

8 Clinical networks & NIHR Faculty are potentially effective means of providing infrastructure support provided that they are inclusive rather than elitist. The recent non-renewal of the NHS England Copyright licence is one example of where infrastructure to support research has been eroded. Without this licence in place this forces researchers to develop more time to administrative tasks such as filling in photocopy request forms in libraries before they can receive their research articles, and contact publishers to request permission to make multiple copies of an article to share with the research team (this may also attract a payment in return for permission being granted). By 06/07/06 nineteen trusts in England had taken out trust-wide licences with the Copyright Licensing Agency; ironically this approach will probably cost more than negotiating and paying centrally for one licence to support copyright issues across NHS England. The infrastructure to support this aspect of the research process is therefore fragmented in NHS England, and is confusing to it staff. Translational research has to be positively encouraged, often there is difficulty with the pure scientist understanding the homogeneity of the clinical population, making the application of laboratory (or even health control) findings less precise in the clinical environment. NICE produce evidence based guidance that is an excellent resource. Commissioners are driven by meeting financial targets and will frequently compromise on guidance advice. More research, particularly around service delivery and more resources are needed to support the implementation of guidelines from both the clinicians and commissioners perspective. How this conflict may be resolved is a challenge. The government must encourage the widespread application of clinical research to provide an effective health care system. Clinical practitioners must be encouraged to appreciate the literature to develop evidence-based practice. This should be orchestrated though professional bodies. Equally commissioners should have clear guidelines for developing evidence-based services for the local population. Some of the money should be retained for funding to ensure that any highly important issues raised by NICE can be addressed rapidly. Development of novel clinical services within the NHS organisation should be fully justified to the senior management team. Lack of evidence should not mean lack of support; resources should be allocated to explore the feasibility of developing a novel service. This should also be supported through the local NHS R&D department to ensure accurate and appropriate data collection (and ethics as necessary). Currently there are no systems to support this type of local activity for clinical researchers. Research knowledge should be embedded into the knowledge and skills framework for all health care workers. The suggestion is not for all clinicians to be research active but to develop an appreciation of the process. CPD requirements indicate that this will be evaluated retrospectively. It would be interesting to evaluate the number and quality of, for example journal clubs that nurses and AHP s attend that are offered by clinical researchers. Funding bodies should co-ordinate activities though a systematic transparent forum. Clear incentives for translational research should be promoted. Once proof of concept has been established, from basic science through to testing in the clinical environment, opportunities should exist for the broader application of this science in healthcare provision. 8

9 9. What lessons should the UK learn from other countries in making the proposed changes to the institutional arrangements for the funding of health research? Some lessons could be learnt from the devolved countries within the UK. Both Scotland and Northern Ireland have successfully supported the Nursing and Allied Health Professions to increase their research activities. Northern Ireland has also established strong multidisciplinary recognised research groups. 10. In implementing the single fund for health research, to what extent should the MRC and DH / NHS R&D be merged or brought together? And to whom should the single, ring-fenced fund be accountable? Please provide reasons and any supporting evidence for your response. The MRC and DH / NHS R&D should be brought together and in doing so there should be a reduction in the resources used for administration purposes. Methods of research funding should also be simplified and made more transparent to the research community. Should only be merged if total commitment of MRC and DH to supporting all health research including all health care researchers and users of healthcare research. This should be reflected in its governing body. The fund should be accountable to the public and government but have independent peer review processes 11. To what extent does the success of recent innovations in health research (e.g. Clinical Research Networks) and the proposed structures rely on the new Connecting for Health NHS IT system, and to what extent should it do so? The principle aims of the Clinical research Networks is excellent. The clinical areas are currently quite limited but the multi-disciplinary approach is encouraging. Connection for health should provide an enormous epidemiological resource. E-health care presents an enormous challenge to clinical researchers and an opportunity for integration of other university/nhs departments to collaborate. 12. Given that NHS R&D is currently devolved, but that the work of Research Councils is not, how can these functions work best together to maximise the health and economic benefits to the UK? There needs to be improvements in the communication with devolved R&D Offices. Strategic developments should be carried out in consultation with all and not just restricted to England. The same opportunities should be made available throughout the UK to ensure that the best placed people carry out the research to the highest standards possible. This will have to involve communication with each of the devolved Offices prior to the development of any new funding opportunities to ensure that there is agreement with regard to availability and source(s) of funding. However, it is essential that this does not get in the way of high priority research being carried out to the highest standards. References 9

10 Horton R. Health research in the UK: the price of success. Lancet Ilott I, Mead J, Roberts J, Hammond R (2004). Enhancing Stakeholder Involvement in NICE Guideline Development: Learning lessons from the experience of the allied health professions, health visiting, midwifery and nursing. The Clinical Effectiveness Forum for Allied Health Professions: London. Dawn Wheeler Head of Research and Clinical Effectiveness The Chartered Society of Physiotherapy 28 July