Editorial

Towards constructive innovation and rigorous evaluation: a new series on methods for promoting and evaluating participation

Various trends over the last few decades have promoted the involvement of individuals in decision‐making about their own care and the involvement of health service users and the wider public in decisions affecting health services. Despite this, participation in health care remains a relatively young area in terms of conceptual and theoretical development, practice and research.

People from diverse professions and academic disciplines including economics, health policy, management studies, medicine, nursing, occupational therapy, physical therapy, social work, sociology, philosophy, politics and psychology have shown interest in issues relating to participation in health care. They use such a variety of concepts and theoretical frameworks that it can be difficult to draw together relevant insights from the different perspectives. A strengthening of the bridges between specific professional and disciplinary dialogues would allow a more efficient flow of ideas and insights, enhance theoretical development and lead to a richer understanding of issues relating to participation. Definitions need to be agreed upon and the relationships between concepts clarified.

Progress in implementing various forms of participation in health care has, not surprisingly, varied between and within countries and aspects of health care. Social, cultural, political and economic factors will continue to influence the nature and extent of activities to promote the involvement of consumer and community constituencies in health care policy, health services and research. Ideally, however, practice will increasingly be informed by rigorous research.

Relatively few approaches to promoting participation have been tried, tested and become generally accepted. Indeed, many innovative approaches are being tried but not tested. If we want to maintain and raise standards, then we␣need to evaluate different approaches to participation.

Research into issues relating to participation in health care has, like the practical introduction of participation, tended to be patchy. Experience of evaluating the new and rapidly evolving approaches to promoting participation, whether at individual or community levels, is limited. Whilst many of the established principles of good research apply to this as well as other fields, the evaluation of policies and interventions to promote participation in its various forms does raise particular issues.

The variety of rationales and motives for promoting particular forms of participation leads to a variety of opinions about the types of criteria against which attempts to promote participation should be evaluated. Opinions will vary about the relative importance of different effects and how they should be valued. ¹ Consider, for example, the convening of a citizens’ jury to consider whether a particular health care system should provide gender reassignment surgery (or Viagra, assisted conception, cosmetic surgery). By what criteria should the success or otherwise of the citizen’s jury be judged? A variety of processes or outcomes could be assessed, including for example: the people who participated as jury members and/or witnesses; changes in the understanding and attitudes of jury members; their satisfaction with the processes of the jury; the conclusions they came to; the extent to which their conclusions were disseminated to other members of the public, health professions, or managers; the␣influence that their conclusions had on the decision of the health care provider; or the jury funders’ satisfaction with the processes, conclusions or influence of the process. How should its costs be weighed against its processes and outcomes?

How should the citizen’s jury be compared with other techniques for incorporating ‘public opinion’ into decisions about health care provision? The selection of evaluation criteria will often incorporate value judgements and it is important that these are recognized as such.

The operationalization of concepts and the development of measures of the processes and outcomes of participation are also important issues for those who want to evaluate interventions to promote participation. It is striking how few well validated ‘standard’ measures we have for assessing the processes of participation. For example, a wide range of scoring systems and coding frameworks have been developed for analysing various aspects of doctor‐patient communication in consultations. Even those that purport to assess similar aspects may in fact be tapping in to different things. Different face‐valid measures of patient‐centredness, for example, have produced quite different results when applied to the same sample of consultations. ^{2 , 3}

The interventions that are used to promote participation in health care are often complex. They may involve several components and/or vary according to the attributes and skills of the individuals who deliver them. Consider, for example, an intervention to help women with early stage breast cancer participate in an informed way in decisions about their care. This might involve an additional consultation with a specialist nurse who provides verbal information, a sympathetic listening ear and an information booklet that takes women through the decision in a structured way and suggests a preferred option on the basis of their responses. Evaluations of the whole intervention would not allow us to identify which components of the␣interventions contributed to any observed effects. If the evaluation study involved just one or two specialist nurses, any generalizations of the findings would be difficult.

These are just a few of the methodological issues that require attention if we are to improve research and practice relating to participation in health care. Health Expectations plans to publish a series of papers focusing on the techniques for securing the participation of individuals or groups in a range of health care activities, and on methods for evaluating these techniques and/or the different forms of participation that they aim to promote. In relation to␣techniques for promoting participation, we will seek to explore the theoretical and practical strengths and weaknesses of different approaches. In relation to the methods of evaluation, we will consider how established research methods can best be applied in this field, appraise available measures and review some of the novel research approaches that are being developed.

Among the topics on which we hope to include papers are:

• techniques for incorporating public opinion into decisions about the prioritization of health care services;

• the roles that patients or service users might play in the training of health professionals;

• methods for eliciting and using feedback from health service users;

• approaches to identifying the needs and views of ‘marginalized’ or ‘socially excluded’ people;

• classifying different forms of participation;

• measuring and evaluating the roles that people play in decisions about their own care;

• measuring and evaluating the contributions of individuals to groups that make decisions about health care policy, services and research;

• criteria for evaluating attempts to involve health service users in health policy and health service management decisions.

We envisage that papers will vary in the breadth and depth of their focus. For example, a paper that gives an overview of a variety of techniques might be followed by a more in‐depth consideration of one or more of those techniques. Suggestions about topics are welcome and potential authors are invited to submit methodological papers to the editorial office in the usual way. All papers in the series will be peer reviewed.

Acknowledgements

Vikki Entwistle is partly funded by a Special Research Fellowship from the Leverhulme Trust.