Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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Public Health Observatories have a key role to promote primary care research
- John R Wilkinson (8 January 2005)
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Overcoming one of the barriers between Primary Care and Research
- Mary T McClarey, Susanne Smith (10 January 2005)
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Another reason to rethink research governance requirements?
- Ike Anya (11 January 2005)
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Supporting Research in Primary Care
- Roger H Jones, Adrian Eddleston, Gill Rowlands (14 January 2005)
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RDSU and the weakest link
- Michael Gordon (29 January 2005)
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Their needs be public involvement in decisions
- susanne mccabe (29 January 2005)
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Primary care research – all is not lost!
- Susan A Nancarrow, On behalf of the Primary Care Function Group of Trent RDSU (3 February 2005)
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Primary Care Networks and PCTs must learn to live and work together in the muddy ground of local research health services research
- Richard Byng (5 February 2005)
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The authors respond
- Frederick M Chen, Azeem Majeed (8 March 2005)
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John R Wilkinson, Chair of Association of Public Health Observatories North East Public Health Observatory, Stockton on Tees, UK . TS17 6BH
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It is disappointing that Chen and Majeed (1)do not mention the potential role of Public Health Observatories (PHOs) in supporting primary care research. In England, there is a public health observatory in every region, and in Wales one covering the whole country (similar institutions exist in other countries also). Recently the White Paper (Choosing Health) (2) in England signalled a very significant increase in the resources that would be made available to PHOs. PHOs work very closely with their primary care trusts and public health networks. They are either based in universities or have very close links with them. The White Paper requires PHOs to develop local health reports among a number of additional tasks which the White Paper sets out. PHOs have access to a variety of data together with expertise in population health and are therefore very well placed to work closely with primary care to support the public health and the primary care agenda. In particular, we are working closely with those involved in the national programme for IT (NPfIT) to ensure that this potentially vast resource can answer the very important public health questions. Perhaps it should not be forgotten that it was the first president of the Royal College of General Practitioners, Dr Will Pickles who published the seminal text 'Epidemiology in Country Practice' in 1939 (3), which is a reminder of the contribution that primary care can make to the research agenda. Contact details for all PHOs can be found through the website of the Association of Public Health Observatories (www.apho.org.uk) (1) Frederick Chen and Azeem Majeed Primary care trusts and primary care research BMJ 2005; 330: 56-57 (2) Department of Health. Choosing Health. London 2004 (3) Pickles W. Epidemiology in Country Practice. 1939. John Wright and Sons, Bristol Competing interests: None declared |
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Mary T McClarey, Head of Development- Research and Education Plymouth teaching PCT, PL21 9HG, Susanne Smith
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Chen and Majeed are absolutely right about the need to better involve Primary Care Trusts in the research agenda. They are spot-on in their diagnosis around the fear that medical schools, and other research active bodies, are sometimes reluctant to engage in small scale, local health services research as it will not be highly rated in the Research Assessment Exercise and they again hit the mark when predicting that unless primary care focused research thrives there will be major long term adverse consequences for the NHS. However, I believe they misunderstand the Quality and Outcomes Framework for GPs if they believe it offers opportunities for collaboration in research - it does not. Indeed, nowhere to date do Primary Care Trusts or GPs gain any recognition - outside of that bestowed by the research community to the research community - for being research active. Primary Care Trusts have pressing targets to meet, a plethora of data to collect and often impossible financial targets to achieve. Until Trusts are actively measured through their targets and action plan assessments on their research performance, their drive will be naturally focussed elsewhere. However, all is not lost - there may be one way to turn this around - if we can get research activity incorporated within the Healthcare Commission’s assessment framework, or better still set research activity as a requirement for either core or developmental standards then eureka!! it may be classed as core business after all. The Healthcare Commission is currently undertaking a consultation exercise which closes on 21st February. If clinicians are concerned to ensure research is acknowledged as core to the business of Primary Care Trusts they have until then to make their voices heard and information is available on the commission’s website: www.healthcarecommission.org.uk Competing interests: None declared |
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Ike Anya, Specialist Registrar in Public Health Bristol North PCT
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Chen and Majeed make a convincing case of outlining the need for greater collaboration between primary care trusts and academic departments in producing locally relevant and useful research. Another barrier is the fact that with the current research governance frameworks in place, very few if any, research projects can meet the time scales that most PCTs in the contemporary heavily target-driven context can afford. In the time that it takes to develop a research proposal and jump through the relevant ethical approval hoops, most PCTs would have already had to make hard decisions and financial commitments on services, limiting the usefulness of the research. This, perhaps is yet another reason to review current research governance frameworks. Competing interests: IA is currently based in a primary care trust |
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Roger H Jones, Professor of General Practice & Primary Care King's College London, 5 Lambeth Walk, London, SE11 6SP, Adrian Eddleston, Gill Rowlands
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Chen and Majeed (1) provide useful suggestions for how primary care research networks (PCRNs) can work more closely with, and be supported by, Primary Care Trusts (PCTs), to mutual benefit. We strongly endorse this approach to joint working, which we think is likely to lead to more relevant research and better implementation of research findings. The importance of research in primary care and at the primary:secondary care interface has been repeatedly emphasised; it is often unwise to try to apply the results of research conducted in other settings to patient management in primary care, and health services research, examining new ways of providing care, is essential to underpin an effective health service (2). High-impact primary care research has often been conducted in close collaboration with secondary care colleagues. Recently, however, there have been concerns about the health of primary care research (3), and the most appropriate arrangements for supporting it. Tensions can often develop between the needs of academia and those of the health service, with adverse consequences for the relevance and implementation of research in practice (4). Primary care research networks, currently numbering over 40 in the UK, have emerged in a variety of shapes, sizes and functions, generally based in or around an academic department of general practice and primary care, and with strong links to individual practitioners and practices, although often with less close linkage to primary care organisations (5). NHS Primary care organisations themselves, have undergone a process of almost unparalleled change over the last few years, and PCTs understandably find it difficult to keep research on their agendas, let alone at the top of them (4). Joint working between the health service and PCRNs provides a promising approach to squaring this circle. We are able to report on an innovative development – Pathways for Research – in which the South East London Strategic Health Authority and its six constituent PCTs are working closely together with secondary care, with a number of higher education institutions and with existing, formalised, PCRNs. This initiative has been driven by the local NHS as they have recognised the place of local and national research to underpin and evaluate improvements in primary and community health care and the need to stimulate effective, relevant and broadly based health services research. If successful, this will provide a useful model of how such NHS- led collaborations can work to the benefit of all. In the wake of the Benefits for Patients Working Party, the establishment of the UK Clinical Research Collaborative and the new directorship of the Medical Research Council’s General Practice Research Framework, important discussions are now taking place about the best ways in which PCRNs - likely to be generic, rather than disease-specific – can best be integrated into this system, to provide benefits for those researching both in and on general practice and primary care. There are other opportunities, however, to further strengthen the research infrastructure of general practice in the UK. For many years the concept of the ‘well-found laboratory’ has formed the basis for infrastructure support for the basic medical sciences, and it is time that the matching concept of the ‘well-found community laboratory’ is taken seriously. This means providing adequate information for high-quality epidemiological, clinical and health services research studies to take place in the community, with appropriate collaboration. It is a shame that the recent Medical Research Council e-Science Initiative was unable to fund primary care research in this area – the development of grid and thin client technology, together with new safeguards on patient data, offers exciting opportunities for large scale research in the community. It might also be appropriate that research of this kind is supported by other funding streams such as the Strategic Research Infrastructure Fund (SRIF) which currently provides £500million per annum to higher education institutions. A well-found clinical laboratory will only deliver its research and commercial potential through the provision of high quality IT infrastructure and other dedicated facilities, and the necessary staff for data handling, analysis and research co-ordination. Yours sincerely Roger Jones
Adrian Eddleston
Gill Rowlands
References 1. Chen F, Majeed A. Primary care trusts and primary care research. BMJ 2005; 330; 56-7 2. Mant D, Del Mar C, Glasziou P et al. The state of primary-care research. Lancet 2004; 364; 1004-06 3. Editorial. Is primary care research a lost cause? Lancet 2004; 361; 977. 4. Rowlands GP, Crilly T, Ashworth M, Mager J, Johns C, and Hilton S. Linking research and development in primary care: primary care trusts, primary care research networks and primary care academics. Primary Health Care Research and Development 2004; 5(3); 255-263. 5. Thomas P, Griffiths F, Kai J, O’Dwyer A. Networks for research in primary health care. BMJ 2001; 322; 588-90 Competing interests: None declared |
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Michael Gordon, GP Academic Training Fellow School of Health and Related Research, The University of Sheffield S1 4DA
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I agree with Chen and Majeed and others who suggest that supporting primary care research lies in successful partnerships between primary care and the academic sector 1;2 but was surprised at their failure to specifically mention the role of the eight Research and Development Support Units (RDSUs)3 . In our region the Trent RDSU (formerly Trent Focus) successfully provides training and support for Primary Care research4 and any suggestion that individual PCTs duplicate that function rather than simply signposting their existance would seem foolish. It is my view that many PCTs are immature in structure and in regard to promoting research in primary care primative in function. It is surely part of the challenge for RDSUs, who already enjoy influential relationships with academic departments of general practice, to forge the necessary stronger links with PCTs. Part of this work will involve advising PCT research leads on how to use the existing pathways within PCTs to effect influence on the decision making elements. The link between academics and PCTs will be only as strong as the weakest link in the chain of relationships which may well be found within overwhelmed PCTs. Reference List (1) Chen F, Majeed A. Primary care trusts and primary care research. BMJ 2005; 330(7482):56-57. (2) Department of Health: Research and development for a first class service. Department of Health: Leeds . 2000. (3) Department of Health. National Programme for Research Capacity Development: Academic Infrastructure. Sunnary of the Draft National Strategy. Department of Health: London . 2003. (4) Cooke J, Owen J, Wilson A. Research and development at the health and social care interface in primary care: a scoping exercise in one National Health Service region. Health and Social Care in the Community 10[6], 435-444. 2002. Competing interests: None declared |
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susanne mccabe, retired cf24 3pf
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There is very little awareness or involvement in decisions about how services are provided. Whereever certain groups are targetted for special attention or research it is important that they are represented by independant spokespersons such as in the case of Refugees or Asylum seekers, from the Refugee Council, in addition to local community groups which often depend on their funding from statutory agencies locally which can compromise independance. Targetting itself can increase stigma and perceptions of certain people, such as single mothers, as being less able, more of a 'problem', more costy in terms of support. The Camden and Islington Trust published a report some while ago (on website Camden and Islington PCT) re 'The Caversham Integrated Care Project' which was piloted at one of the largest group Practices in the area, to look at ' addressing the issue of children in need through collaborative working between the practice, social services the volutary sector and other stakeholders. The practice audited the files of all families with childrn under 18 years of age and 'found that as many as 33% could be categorised as being, or at risk of becoming children in need'. All families were not initially contacted to gain their agreement to that part of the process. Carrying out an 'audit' or a 'project' means that there is no obligation to gain ethical approval whereby a team of people from various sectors had the right to investigate personal information on files of people registered with GPs and to tag their files for special attention and follow up. It is not clear whether the families knew what criteria was used to classify them or whether they were given the opportunity to agree or not before their files were tagged as being or at risk of becoming 'at risk'. In this case those who subsequently agreed to be involved in the actual project when it was set up, were enrolled mainly by GPs, other referrals and via notices in the surgery. The practice was praised by a Social Service Inspection as providing an innovative project but it intrudes much farther into personal lives than most people expect when they register with a GP. If they do not wish to participate there is no other place to go when group practices are paid to provide a service over a wide area. The information which deemed certain families as at risk will remain on file permanently when there is an obligation not to remove notes. Very soon information will be put on a National Electronic Data Base. Nevertheless this Report stated that 'Information sharing betwen agencies in cases of children 'in need' is still problematic'.......'the threshold for breaching confidentiality is open to interpretation..... Cross linking to fles of other family members is also carried out'.....'there are also problems with mobile populations such as asylum seeking families. A need to provide a clear framework at PCT level may be needed in future'. That this had concern had not been dealt with before the project was up and running using very sensitive inforamtion is astonishing.This especially as one of the GPs inolved had stated previously 'in an internal briefing seen by the Observer that..'From a position of being the guardians of confidentiality, medicine has now fallen behind the highest standards, and routine practice now fails to fulfil the basic principles of data protection. There has been no public debate, and the public as both citizens and patients, are mostly ignorant of the degree to which information is passed around. (Sunday June 25 2000, Anthony Browne Health Editor, The Observer).Just so. Of the categories identified as at risk or potentially ar risk 'Hostel dwellers and Asylum Seekers are now routinely being recorded and identified as vulnerable'..their files are tagged and assigned a 'family links' code. This particular practice is involved with research. But as above Audits can be carried out usig information without people's kowledge or consent. Healthworkers do not have the right to withhold agreement to some requests for data. Citizens have the right to participate in such sensitive decisions when the NHS Plan is promoting relocating social services to Primary Care settings and encouraging joint working and information sharing......It also promises financial rewards for satisfacory assessment of performance to support this aim. This makes it all the more important that research and projects are carried out independantly by those whose interests are not compromised and with the knowledge and approval of local populations, particularly targetted groups. What may be thought of as benign intervention can have serious pitfalls for those on the receiving end, not least the ptential for undermining autonomy and increasng stigma. the Editorial stats ' Desspite the government's committment to PCTs and their role in Primary care research, scepticism exists about the ability of Trusts to take on this role 'There can be no certainty that PCTs will commission in a way that promotes and safeguards education, training and research....'there is a lcaak of understanding in PCTs about roles and responsibilities in relation to learning and research across the whole of health,social care and education'. On an individual level there is also a conflict of interest whereby people consult healthworkers without the knowledge or expectation that they are beig perceived as potential research subjects or being categorised according to check lists. Refs: BMJ Editorial; Observer; Caversham Integrated Care Project Evaluation Report, Camden and Islington PCT Competing interests: None declared |
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Susan A Nancarrow, Primary Care Research Coordinator Trent RDSU, University of Sheffield, S1 4DP, On behalf of the Primary Care Function Group of Trent RDSU
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The primary care based reforms of the NHS(1) and the management culture which values quality and evidence based effectiveness, means that primary care health is an essential arena for research activity. Research Development and Support Units (RDSUs)(2) have a function in building capacity to address the barriers to primary care research highlighted by Chen and Majeed(3). There are four major barriers to undertaking research in primary care: the overwhelming complexity of research management and governance (RM&G); a lack of capacity within the Primary Care Trusts (PCTs) to actually do the research (practitioner skills, knowledge and time)(4); organisational cultures which are largely unsupportive of research; and the fact that primary care research still does not feature highly on many funding or research agendas. The impact of these barriers is that PCTs put their resources into meeting the short term, measurable, but constantly shifting policy targets set by the Department of Health, at the expense of creating longer term capacity and infrastructure to support sustained knowledge creation. However, these barriers are not insurmountable and can be addressed by RDSUs in a number of ways. For instance Trent RDSU has introduced mechanisms to support organisations in their adherence to RM&G through a network of research leads across our region, the provision of on-line support resources, and a dedicated staff member to coordinate these. A number of local and regional research networks have been introduced specifically to support primary care researchers(5). One of these, the Collaborative Research Network, includes 57 general practices that are contracted to engage in research. It provides a clinical setting for researchers to do research, and an environment for research capacity building. In order to help develop capacity and skills to undertake research within PCTs, we provide tiered, flexible training approaches which support new and existing researchers at all levels of their careers. Additionally, there are a range of models of financial and professional assistance for new and developing researchers within the context of supported research teams(6,7). As far as possible, we engage research leads and senior managers in the research process in order to develop a research friendly culture. RDSUs are an essential bridge between primary care, PCTs and the academic community. A major part of out work is to support the strategic direction of research and development in PCTs and to build alliances that include PCTs and the research community. We do not deny that primary care is a difficult forum in which to develop research, however there is a growing ‘tool-kit’ of approaches to overcome these barriers. 1. Department of Health. Shifting the Balance of Power: The next steps. London: DoH, 2002. 2. Department of Health. National Programme for Research Capacity Development: Academic Infrastructure. Summary of draft National Strategy. London: DoH, 2003:5. 3. Chen F, Majeed A. Primary care trusts and primary care research. British Medical Journal 2005;330:56. 4. Jowett SM, Macleod J, Wilson S, Hobbs FD. Research in primary care:extent of involvement and perceived determinants among practitioners from one English region. British Journal of General Practice 2000;50(454):387-9. 5. Thomas P, Griffiths F, Kai J, O'Dwyer A. Networks for research in primary care. British Medical Journal 2001;322(588 - 90). 6. Lee M, Saunders K. Oak trees from acorns? An evaluation of local bursaries in primary care. Primary Health Care Research and Development 2004;5:93-5. 7. The UK Federation of Primary Care Research Networks conference. The Designated Research Team approach to building research capacity in primary care: the learning so far. Mapping the Future: The changing world of primary care research; Dec 2-3, 2004; York. Competing interests: None declared |
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Richard Byng, Locality Lead Peninsula Primary Care Research Network (PenReN)
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Chen and Majeed provide a useful overview of the current situation regarding primary care research and primary care trusts(PCTs).(1) It is paradoxical that PCTs’ core problems - of how to improve access and joint working at the interface at a local level - have most to gain from research skills but rarely benefit from a successful service-research collaboration. PCTs are charged with delivering improved evidence based practice and yet the delivery of priority policies is highly dependent on local context. As Chen and Magid suggest, primary care researchers are reluctant to become involved in local health services research which may not rank highly on the Research Assessment Exercise (RAE). But PCTs, apart from hidden in often disconnected public health departments, rarely have the skills for or understand the need for good quality evaluation of local and national initiatives. It is precisely this murky ground of local health services research which PCTs and local primary care researchers need to learn to inhabit. Primary care networks and academic departments need incentives to get involved in research which may be of particular benefit to the local health economy but be less prestigious in research circles. Nationally, if networks work together and form virtual partnerships around shared agenda for research, sharing skills as well as means of dissemination, then the quality of research and learning about issues of common concern will improve. At a local level each service development or innovation needs to be briefly assessed to determine whether it requires an evaluation at all, and whether that evaluation may be of more than local interest, in which case it should also be classified as research. This will require more managers to be aware of the advantages and costs of evaluation and research. This strategy will help ensure vibrant primary care development and research activity. It will allow improvements in local health care delivery as well as providing important information for those implementing local and national policy across the NHS, and possibly beyond. Finally, it will demonstrate that local academics have something to offer to PCT managers and lead clinicians. It will allow the development of trust required for PCTs and practices to engage in those less locally specific research questions, which provide rewards in the current RAE. Chen F, Majeed A. Primary care trusts and primary care research. British Medical Journal 2005;330:56. Competing interests: None declared |
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Frederick M Chen, Acting Assistant Professor University of Washington, Seattle, Washington 98105, Azeem Majeed
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We appreciate the thoughtful responses to our editorial. Wilkinson is correct in stating that the Public Health Observatories have great potential to play an important role in primary care research. We hope that this potential is realised in the future. One of us (AM) works with two public health observatories on primary care issues. We agree with McClarey that primary care research is not part of the current Quality and Outcomes Framework, although we do feel that research and evaluation underlie the guiding principles of the effort. We would support including contributions to teaching and research in the framework. It is true that research governance has sometimes hindered the conduct of primary care research in Primary Care Trusts (PCTs). This may become less of an issue as researchers become more familiar with the requirements of research governance. We were remiss in failing to mention the role of Research and Development Support Units (RDSU), as both Gordon and Nancarrow point out. The Trent RDSU is a particularly good example of the resources and capacity that an RDSU can offer to collaborating PCTs. We are heartened by the comments of Byng and Jones, who both identify the way forward for PCTs - in collaboration with academic departments and other organizations such as Strategic Health Authorities. Frederick Chen, University of Washington and Azeem Majeed, Imperial College Competing interests: None declared |
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