This article looks at some of the ways in which health voluntary sector organisations currently use research, how new ways of providing support for this are developing. We raise issues with the challenge presented to voluntary sector organisations conducting research in the current economic climate, with regards to the NHS policy context.
The new NHS provides both a rationale and (perhaps?) new opportunities to undertake research. For example, this could be to examine the nature of the services (and their outcomes) that patients groups receive, or are likely to receive in new commissioning arrangements.
Building new ways of working, to support research in the voluntary sector
KNV Research is a new research consultancy that provides an integrated research and development service or services, to the voluntary sector and public-sector organisations that have some kind of health remit.
We provide research services that look at the social dimensions and factors in healthcare. This includes looking at the ‘impact of new policy on patients’, investigating issues around the ‘access to services’ and ‘patient’s experiences of health care’. We work with voluntary sector organisations to help them decide what research they need to do, but also give them ideas about how to fund that.
We also set up teams of researchers to provide research services to the voluntary sector, which include relevant (project specific) professionals from within the NHS or academia. These teams are multidisciplinary, and provide the right expertise to enable the organisation to not only do high quality, academic standard research, but to secure further funding for that.
How do organisations with a health remit use research?
As an organisation we have contacted about 50 different voluntary sector organisations with a health remit – from those who are smaller (who may provide primary support and advice to patients) through to those who also function as a ‘research grant’ organisation, or some kind of ‘research consortium’. We have found that there is a wide variety of different ways, in which information gathering, or research is used to support these organisations core functions, and remit and many organisations see research as falling into three primary areas.
Consultation and patient’s involvement
The first of these areas is consultation and patient involvement – this can include such activities as including patients in deciding what the research priorities of the organisation are (if they provide research grants to academia for example). Other ‘consultation activities’ that involve ‘information gathering’ from patients, including finding out what patients think of the organisation, how its services are operating and involving patients in the running of the organisation (in some capacity). This also includes doing feasibility studies to support grant applications for funding of new, or different services for patients.
This is particularly relevant at the current time, given the changes in the NHS and new ways of deciding how to deliver services, such as GP commissioning. Many organisations are concerned about the impact of these new changes on their patients, and wish to do research to identify where the problems might lie, or monitor the impact of services reorganisation on their clients or patient groups.
Raising awareness or policy orientated campaigns
The second way in which organisations tend to use research is to inform activities like ‘awareness raising’ about the illness amongst the population, communities or professionals, or to inform campaigns associated with these activities. Publishing research helps to keep the organisation to be at the top of the agenda.
Research is also used to allow organisations to construct their own priorities, in terms of campaigning for policy changes, related to a specific condition or illness. In this way organisations represent their patients and clients, by trying to raise awareness to improve services on their behalf.
Funding clinical or biochemical research directly
The third way in which voluntary sector health organisations use research, is to provide research grants to others (usually academics) but sometimes, beyond that. There are often consortiums or formal collaborations, that develop – either with other organisations (who overlap in terms of symptoms or condition etc) or collaborations with the research institutes based in the NHS, and/or with links to other organisations (such as universities).
Often health voluntary sector organisations prioritise funding for ‘clinically orientated research’, which has a remit to feed directly into clinical practice, in terms of developing and improving methods of testing, diagnosis or treatment. This has a long tradition in voluntary sector, and is very popular with patients who believe they need to find ‘a cure‘ for their condition or illness, and see science or clinical medicine, as the primary or most important ‘potential solution’. It also allows collaborations with practising clinicians, and other medical or clinical professions, who are seen as ‘adding value’ and status to a voluntary organisations work, such that they often sit on management boards, and /or research grant funding processes. Often the structures for supporting this type of research are managed separately from other types of research undertaken by the same organisation, and are given a different level of organisational ‘priority’.
The value of non-clinical research
Looking at some of the major journals that publish research (that are not about clinical outcomes specifically), but investigate some of the other social factors and dimensions into access to, and delivery of healthcare (including policy analysis) is interesting. It’s quite clear that many researchers are focusing on the social dimensions because of the importance of them (in the context of improving access to, and therefore outcomes from healthcare). Whilst the general public may not understand (necessarily) the importance of this kind of research, to enable them and their peers to receive better care, it clearly does have relevance.
Some examples of these types of approaches, illustrate the value of ‘non-clinical research’ to the successful delivery of healthcare and the improvement of health outcomes, from it. The examples also show how this would be relevant to voluntary sector organisations, and their on-going roles.
Why do ‘social research’ in voluntary or public sector health contexts?
Much health orientated research, has some degree of exploring ‘social dimensions’ of health or health care, since it’s widely understood to be of value, to improving outcomes, from that care. That could be such areas as examining social factors in trends in illness or morbidity, such as public health or epidemiology studies that look at social class, age or gender, alternatively research can focus directly on the social processes, impact of, or access, related to services for patients, communities or groups of people.
We have provided some explanations of how and why these types of research are of value to voluntary sector organisations, with some examples that illustrate, the approaches that can be used.
Example One: Patients understanding of health
Understanding issues in relation to how patients ‘perceive’ health issues and/or care processes, is important to knowing how to improve their experience of care. Health behaviour, knowledge and opinions of individuals, groups and communities, influence how people interact, with health services and how ‘successful’ that interaction is.
Patients may understand health conditions, symptoms or treatments differently to doctors, and this can affect how they engage with health services or advice, affecting the outcomes of healthcare. For example if patient does not understand why or how to take medicines, or when to ask for a review of their medication, their compliance will be poor. Voluntary sector organisations need to know about these issues, since they reflect on various aspects of their role, such as giving advice to patients and raising awareness amongst professionals.
Example Two: Access to care and services
Differences in ‘access’ to healthcare exist and need improving – certain groups or types of patients may not get as good levels or types of care, as others. Voluntary sector organisations would need to know how this affected their own patients or clients groups, or those that treat or support them. ‘Gaps’ in services exist, locally, regionally and nationally, and these need to be identified.
Example Three: Services evaluation and engagement with services
Social dynamics in relation to health care affect ‘physical’ or ‘clinical’ outcomes from that care. Good health care outcomes are not just affected by the methods of diagnosis or treatment, but about the ‘nature of the services’ and how patients do (or do not), engage (or experience) those services. Reviewing the impact of specific sets of services on groups of patients can reveal issues and problems that had not previously been identified. Voluntary sector organisations need to understand the issues of concern to their own clients (or client groups) such as patients, practising doctors and other practitioners and carers.
Example Four: Health systems and practices
The ways in which health systems are set up to deal with certain types of clinical conditions, how they are organised and the kinds of clinical practices used, affect health care outcomes. The impact of different ways of delivering or organising health care systems for a specific condition or medical issue, and/or the clinical practices used, is important knowledge for governments and those organisations that represent patients and plan service provision.
Example Five: Policy and its impact
The impact of existing policy on healthcare practices can be monitored and improved. Understanding how current healthcare practices really affect groups of patients or communities, is important for national and local politicians, healthcare organisations, and so on. Voluntary sector organisations that may wish to influence the national or local agenda need the right information to do so, about their ‘client groups’ or the ‘clinical conditions’ they deal with. Evaluation of policies and how they impact patients can therefore be important information for a ‘representative’, ‘campaigning’ or ‘policy orientated’ organisational role.
KEEPING UP TO DATE WITH POLICY CHANGES
The new NHS and the role of research: conclusions and issues for the future
New structures for the health service, that include GP commissioning consortiums, Public Health England and it’s new relationship with local authorities are going to affect the way in which services are delivered both nationally and locally. Voluntary sector organisations will be keen to know how this affects their own clients or patient groups. There will therefore be incentives to do of research patient research (research that complements ‘clinical or biochemical’ research that enhance clinical processes, such as testing and diagnosis etc.)
As ever, for voluntary sector organisations (that struggle to remain solvent in times when it’s difficult to fund raise) research is going to be difficult to support. However there are ways in which research can enhance the organisation’s work to such an extent that it is a good investment for an organisation’s future. This can include such areas as being able to demonstrate how patients are being affected, and how services need to change or be directed in different ways; targeting the kinds of services for patients that are most effective and acceptable; or providing information to enable campaigns to be clear, and targeted, etc.
Opportunities for funding may flow from these perceived needs, if the voluntary sector can think creatively about how to create the resources to do research. It is likely that other agencies (within the research sectors), such as academic departments, other voluntary sector agencies or market research agencies, will be able to contribute to innovative ways of supporting voluntary sector organisation’s research roles. We need some new ideas and approaches to creating the resources for supporting research within the voluntary sector dealing with health issues.
Kate Bloor has worked in research for over 25 years and is a founder of KNV Research; a health, policy and evaluation research organisation that works with the voluntary and public sector: www.knvresearch.com