Public Participation in Public Health Research Paper

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The people have the right and duty to participate individually and collectively in the planning and implementation of their health care.

(World Health Organization, 1978)

Public Health, Politics, And Science

Understanding public participation in public health first requires an examination of two different meanings of public health. One meaning is the status of the health of the public. This public is very diverse and may be considered on a local, national, or international scale. While the English language speaks of the public, a more accurate representation is of diverse publics.

Concern about public health focuses on public ill health and inequalities in health among these diverse populations. Health status differs within and between populations as a result of complex interactions between biological, environmental, social, economic, and ‘lifestyle’ factors. Poor living and working conditions impair health and shorten lives. Health inequalities arise from variations in these social, economic, and environmental determinants and are acknowledged as a major problem in many countries, with many reporting increases during the 1980s and 1990s. Characteristics implicated in health inequalities have been combined and operationalized by the mnemonic PROGRESS for Place of residence, Race/ethnicity, Occupation, Gender, Religion, Education, Socioeconomic position (SES), and Social capital. Age, disability, and sexual orientation are also implicated in health inequalities. These descriptors go some way to identifying those people who should participate in the second meaning of public health.

Another meaning of public health is:

the process of mobilizing and engaging local, state, national, and international resources to assure the conditions in which people can be healthy. . . .The actions that should be taken are determined by the nature and magnitude of the problems affecting the health of the community. What can be done will be determined by scientific knowledge and the resources available. What is done will be determined by the social and political situation existing at the particular time and place.

(Detels and Breslow, 2002)

In the first, passive understanding of ‘public health,’ descriptors of populations delineate differences between diverse publics, which can be politically sensitive. The second, active understanding of ‘public health’ is an explicitly political and scientific activity. The aim of this research paper is to consider the participation of diverse publics in the political and scientific aspects of improving public health.

Interventions For And With The Public

Public health activities aim to design and deliver public health interventions: sets of actions with a coherent objective to promote or protect health or prevent ill health in communities or populations, which may include policy, regulatory initiatives, single-strategy projects, or multicomponent programs. A systematic review of the effectiveness of health service interventions for reducing inequalities in health found interventions that improved the health of groups that are disadvantaged by socioeconomic class, ethnicity, or age; if properly targeted, such interventions could be expected to reduce health inequalities. Characteristics of successful interventions for reducing health differentials include ensuring interventions address the expressed or identified needs of the target population, and involvement of peers in the delivery of interventions. This requires working with people, not just for them, in designing and delivering public health interventions for reducing health inequalities. Health promotion specialists perceive communities as having the potential to promote health from the bottom up. This requires people to have increased control over and to improve their own health. Such empowerment claims to attribute responsibility to people not for the existence of a problem, but for finding a solution to it.

Evidence-Informed Public Health

Four types of research evidence inform public health activities. Type 1 is research that describes risk–disease relations and identifies the magnitude, severity, and preventability of public health problems, thereby pointing to the fact that ‘something should be done.’ Type 2 evidence identifies the relative effectiveness of specific interventions aimed at addressing a problem, and can help to determine what should be done. Type 3 evidence is information on the design and implementation of an intervention, the contextual circumstances in which the intervention was implemented, and information on how the intervention was received, telling us how something should be done. Type 4 evidence is for informing change management strategies for adopting effective and appropriate interventions to address public health priorities that are underpinned evidence about the nature of the problem (type 1), effectiveness (type 2), and delivery (type 3). This may be through improving access to research evidence; skills and resources to seek, appraise, and apply evidence; evidence-informed guidelines; or change management interventions. Type 4 evidence tells us how to transfer knowledge from the research arena to policy and practice decision making.

Evidence-Informed Participatory Approaches To Public Health

Evidence-based patient choice brought together evidence based medicine and patient-centered medicine, transforming concepts about communication and decision making on the individual level. The collective equivalent combines public health and collective involvement in population-level decisions about the need for intervention and in developing and evaluating interventions for their effectiveness and appropriateness; in other words, in generating and making use of all types of evidence underpinning public health activities. The rest of this research paper addresses public perceptions on and participation in all these activities. It considers who the public are, what they think of public health activities, how their perspectives can be elicited and employed for collective decisions about public health, and whether it makes a difference. There are implications for public health research, policy making, and implementation.

Who Is Participating?

Participatory research in rural Africa, a ‘citizen science’ developed for and by citizens facing environmental threats from industrial development, lay membership of research ethics committees, opinion polls reporting on biotechnologies, and patient or public involvement in designing, conducting, or interpreting randomized controlled trials all share the principle of broad participation in debates about research and policy. Who these participants are and how they participate is immensely varied. Methods for their participation have emerged from the disability movement, feminism, market research, international development (Cornwall, 1996), equal opportunities policies, and many other arenas.

This research paper focuses on participation by people whose primary interest in health care is their own health or that of their family, peers, or community as past, current, and potential patients, users of services, and carers; and people representing these groups through community organizations, networks, or campaigning and self-help groups. These people have variously been called patients, users, consumers, survivors, lay people, and citizens. Each term is associated with particular discourses, interests and aversions. For instance, some describe themselves as ‘survivors’ of serious conditions or ‘survivors’ of services perceived as unsupportive or even damaging. Some prefer the term ‘service users’ to ‘patients,’ while others avoid the term ‘users’ because of connotations with drug use. Deviations in terminology also result from a long-running conceptual debate among social scientists about the ideologies inherent in the terms ‘patient’ and ‘consumer’ and the restrictions these might impose on analytic frameworks.

Terminology has varied with geography, between disciplines, and over time. The American term ‘consumer’ suited the commercial insurance-based U.S. health system, and was adopted more widely in health policy circles in the mid-1990s to encompass people in sickness and health even where public funding provides a greater contribution. In environmental health sciences, a popular term has been ‘citizens,’ a term to invoke rights and democracy, but this excludes refugees and asylum seekers. More recently in the health sector, the preferred term has been ‘patients and the public.’ More inclusive language is ‘people who use services’ and ‘public involvement,’ which includes: people who describe themselves as survivors (not users) of services, people who face barriers to service access, and taxpayers. Sociologists refer to ‘lay people’ or ‘lay publics’ to emphasize the diversity of people and groups within the public and to distinguish them from professional publics.

The terms ‘consumer,’ ‘public,’ ‘citizen,’ and ‘lay people,’ when linked with participation, all have implications for evidence-informed services. Consumerism implies customer choice, where information is required to inform that choice whether the customers are patients, service users, or their families and carers. Public involvement invokes accountability and the need for evidence about performance to be available for public review. These uses of evidence invoke a fundamental question about the nature of the evidence: Who decides what evidence to seek and how to seek it? The nature of evidence is questioned again when considering the role of lay publics, their lay knowledge, and their contribution to public health research (Popay and Williams, 1996). Finally, a discourse about citizens invokes the right to be involved in the generation of evidence as well as in the planning and review of services. Patient and public involvement in decisions about their own care or reviewing services is meaningless if, in an evidence informed culture, the evidence is irrelevant to either patients or the public in general. English semantics presents further challenges when some terms have different meanings according to their context. ‘Public’ as an adjective means ‘openly available,’ and as a noun denotes ‘a group of people.’ Confusion may arise if ‘public consultation’ is interpreted as open consultation, rather than consulting the public.

This research paper uses ‘public participation’ as an inclusive term. It uses the general term ‘people’ and specific terms such as ‘patient,’ ‘service user,’ ‘carer,’ ‘women,’ ‘children,’ ‘residents,’ and ‘community’ when these are more accurate.

Whatever the terminology, the aim of a participative approach is to support the participation of those people, individually or collectively, who are most intimately affected by any efforts to improve health on a population-wide basis. Returning to the mnemonic PROGRESS, this means that public health interventions for people who, for instance, live in particular areas, with particular biological or cultural roots, employment (or lack of it), beliefs and education, should be developed with some of these same people to address their concerns and experiences. Those people with the greatest health needs, whether absolute or relative needs, are the same people who are more difficult for organizations to serve appropriately and more difficult to engage in developing appropriate interventions. Particularly hard-to-reach groups are those people with limited social connectedness. On a population scale, this has often come about through population movements. Immigrants, refugees, and asylum seekers are extreme examples of populations with minimal social capital and socioeconomic status. The characteristics that maximize their health needs are the same characteristics that make them hard to reach. In contrast, in some countries it is the indigenous populations who suffer health inequalities, for instance, Maori people in New Zealand, Australian Aborigines, native Hawaiians, the Saami of Norway, Native Americans, and the First Nations of Canada. The explanations for their poor health status can be grouped into four main propositions: genetic vulnerability, socioeconomic disadvantage, resource alienation, and political oppression. The latter three reasons present particular additional challenges to their participation in policy and research, when national organizations and their ways of working have been designed by and for the dominant immigrant populations. Similar challenges may be presented where it is not populations that have been on the move but boundaries that have changed, dividing people who share a common heritage and amalgamating disparate populations. For this reason, public health, and public participation in its policy making and research, may be particularly challenging after the rise and fall of communism in Europe, and following conflicts and changing national boundaries in the Middle East during the twentieth century.

Young people are a particular focus for health promotion interventions, partly because they are already experiencing health inequalities in terms of accidents and injury, mental health, and sexual health, and also because their risk-taking and unhealthy behavior accrues greater health inequalities in adult life. Their participation is, therefore, crucially important.

What Is Participation?

There are a plethora of terms to describe participation in policy and research, sometimes used interchangeably but carrying different interpretations. In some circles, the term ‘involvement’ is strongly associated with consumerism, the introduction of market principles into public services and measurements of client satisfaction and systems for investigating complaints. In contrast, ‘participation’ is more likely to be associated with collective decision making and responsibility in important aspects of service provision and planning. Yet these concepts are conflated with the term ‘consumer participation’ when it is portrayed as being concerned with high standards of information, access, choice, and redress, all elements of consumerism and personal decision making.

Theories Of Participation

How public involvement develops and how it is viewed by health professionals and by different sectors of society is also influenced by who initiates specific encounters, the professional services or the public.

Service organizations wishing to improve the health of the public have often embarked on community development. This is a broad term applied to civic leaders, activists, involved citizens, and professionals seeking to improve various aspects of local communities. Services seeking their own improvement for the benefit of the wider public may embark on an exercise in organizational change, where theories about learning organizations highlight the importance of inclusion, reflection, and managing diversity. An alternative theoretical approach is participatory research, which probably requires the greatest changes in organizational structures and procedures, and is claimed to maximize community and lay involvement. Characteristic features of participatory research include collaboration, mutual education, and acting on the results developed from research questions that are relevant to the community.

Lay people take the initiative as part of broader collective social action, where campaigners and self-help groups emerge as social movement organizations in response to health problems to engage in research under their own initiative.

Degrees Of Participation

An early attempt to characterize public participation initiated largely by metropolitan institutions in developed countries proposed a ‘ladder of participation,’ with rungs on the ladder representing increasing degrees of participation: from nonparticipation or manipulation and therapy through the tokenism of informing, consulting, and placating and to citizen power through partnership, delegated power, and citizen control (Arnstein, 1969). Arnstein described contrasting examples in the United States of frequent ‘attitude surveys’ in ghetto neighborhoods where residents saw their time being taken up for no benefit, and residents elsewhere being delegated and funded to prepare an entire ‘model cities’ plan. A similar scale has been described drawing on participatory processes for research in the developing world (Cornwall, 1996). This acknowledges the tokenism that occurs at one end of the scale and the co-learning or independent collective action at the other. Although these unidimensional scales might provide useful guidance for developing public involvement, practical difficulties arise when trying to apply them to categorize reports of past work. ‘Token’ representatives co-opted for research on people described by Cornwall may in practice be no less influential than the cooperation of local people with outsiders determining priorities for research ‘with’ people, where responsibility for direction remains out of their hands. Indeed, Arnstein’s ladder is explicit about the opportunity for deception, with a midway step labeled ‘placation’ illustrated by an example of:

co-option of hand-picked ‘‘worthies’’ onto committees. It allows citizens to advise or plan ad infinitum but retains for power holders the right to judge the legitimacy or feasibility of the advice.

Real engagement with important, complex issues takes time for thought, discussion, and reflective analysis of opposing views. A critical review of the literature suggests that such deliberative participation offers much promise for achieving the goals of more effective, informed, and meaningful participation:

As their theoretical underpinnings suggest, [deliberative approaches] also have the potential to foster a more engaged, public spirited citizenry and early experiments with these processes suggest that the public finds these processes stimulating and informative. Whether deliberative processes lead to improved or even different decisions is not yet known.

(Abelson et al., 2003)

Individual And Collective Participation

Methods also vary in terms of whether they involve individuals or groups of people. A two-dimensional representation of models of involvement combines degrees of involvement (from information to control) and distinguishing individual and group involvement. People can be engaged individually or collectively through organizations such as support or campaigning groups for specific health issues, schools and clubs for young people’s health, and workplaces or unions for adult health.

Forums And Methods For Participation

However a working relationship has been initiated, and whatever the degree of involvement, there are also many options for the type of forum for exchanging ideas: small face-to-face encounters such as one-to-one interviews, focus groups, committee meetings, or citizen’s juries; large face-to-face encounters such as town meetings or consensus conferences; other media such as written submissions or phone-ins; and polls or referenda. These differ in terms of their size and opportunities for interactive exchange. Within these forums, methods for engaging in a working relationship can vary further in the way in which decisions are made. Methods that support collective decision making include those for eliciting values (such as voting, ranking, scoring, visual scales, and Delphi surveys) and those for aggregating values. For consensus development methods, attention needs to be paid to selecting the participants, choosing and preparing background information, structuring the interaction, and synthesizing individual judgments (Murphy et al., 1998).

Principles Of Participation

Many of these dimensions of participation are apparent in the results of a consensus development study addressing the principles and indicators of public participation in research (Telford et al., 2004). Paraphrased to apply to public participation in both policy and research, they are the following:

  • The roles of public participants are agreed between them and those issuing the invitation to participate
  • Budgets include appropriate costs for public participation
  • Those issuing the invitation respect the differing skills, knowledge, and experience of public participants
  • Public participants are offered training and personal support to enable them to be involved in research
  • Those issuing the invitation ensure that they have the necessary skills to involve public participants in the process
  • Public participants are involved in decisions about how people are both recruited and kept informed about the progress of projects
  • Public participation is described in project reports
  • Project results are available to public participants, in formats and in language they can easily understand.

Participation In Practice

Many of these principles are confirmed by a survey of health bureaucracy consultations (Putland et al., 1997) that found the following key conditions as enabling an organization to consult effectively: official endorsement of consultation at senior levels; staff with expertise, experience, and skills in consultative practices; constructive and ongoing relationships with communities; valuing the knowledge and experience of community members; representative mechanisms that recognize and respect difference; decentralized and devolved decision making for greater accessibility, responsiveness, and flexibility; simple, clear, and consistent structures and procedures; stability in functional responsibilities and continuity of staff; and balanced requirements for economic efficiency and social justice.

Participation In What?

In a world of participatory democracy, there are opportunities for public participation in: assessing problems, their magnitude, and priority for action; developing and assessing solutions; assessing how solutions should be carried out; and making change happen. Examples can be found for all these activities, moreover, some examples of participation address research–action cycles holistically, with public involvement at every stage. Ultimately, truly participatory problem solving relies on democratic knowledge, knowledge that has been accumulated and interpreted with the involvement of a broad range of people.

Assessing Health Needs

There is a long tradition of public involvement in assessing health service needs, particularly in health promotion. Needs assessment is the process of identifying and analyzing the priority health problem and the nature of the target group for the purpose of planning any health promotion action. Health needs have been assessed in four different ways, by:

  • seeking expert opinion based on research (normative need);
  • drawing inferences about health needs by observing the use of services (expressed needs);
  • comparing services provided in different areas (comparative need); and
  • listening to what communities say or feel (felt need).

Full public participation in assessing health needs would have to adopt the last approach to draw on people’s views and interpretations of their own needs, preferably with these people being given information, and time to debate it, about research, use of services, and patterns of provision. Despite being a key focus for health promotion, young people’s participation in assessing their own health needs to inform the development and evaluation of health promotion interventions is negligible.

Developing And Assessing Solutions

The next step is to develop and evaluate interventions to address those needs. Despite a long tradition of community participation in health promotion, and many young people being readily reached through schools, the very setting where their health promotion interventions are delivered, assessing the effects of health promotion rarely actively involves young people (Harden and Oliver, 2001). This reveals how poorly public participation and evidence informed public health overlap for young people.

More influential are trade union members, who have a long history in activism for health promotion, occupational health, and health services (Bastian, 1998). An excellent example combined the participatory principles of health promotion and effectiveness research in a multisite, randomized, controlled trial of a health education program for coke oven workers in the U.S. steel industry that aimed to reduce the risk of occupational lung cancer (Parkinson et al., 1989). This involved a collaboration between academic researchers and the industry’s trade union. The collaboration began eight years before the development of the intervention and affected its content and presentations, a publicity campaign, the design and content of questionnaires and telephone interview schedules, and the hiring and training of laid-off coke workers who served as telephone interviewers. All levels of the union were involved in the program.

Public participation began with enthusiasts and their individual projects. Despite it still not being widespread, there are already efforts to adopt public participation more strategically for assessing interventions. The James Lind Alliance has been established to bring patients and clinicians together in working partnerships to identify shared priorities for research to address unanswered questions about the effects of treatments. There are three elements to this work: identifying questions important to patients and clinicians; assessing whether they really are ‘uncertainties’ or whether there is already existing research on them; and, if genuine uncertainty exists, which of the ‘questions’ should be prioritized. A systematic scoping review to inform their work has identified 148 studies eliciting patients’ or the public’s priorities for outcomes or research priorities, some of which are public health issues.

Working on an international scale, the WHO Advisory Committee on Health Research has sought ways of improving the use of research evidence in developing guidelines. Unfortunately, few detailed methods were found for public involvement, only principles that are or could be followed. These included conducting an early search for evidence using the patient perspective; consulting all relevant stakeholders early in the process, including the public; taking into account health benefits, side effects, and risks; making explicit judgments about which outcomes are critical, which ones are important but not critical, and which ones are unimportant and can be ignored; considering ethical consequences and cultural diversity when deciding which outcomes are important; using research on values and preferences to guide the ranking of outcomes, if necessary, with ranking done by people in a specific setting; who can pay due consideration to local values and preferences; and, if evidence is lacking for an important outcome, acknowledging this, rather than ignoring the outcome.

Assessing How Solutions Operate

Evidence about whether interventions work is necessary, but not sufficient, especially for complex public health interventions. Complex multicomponent interventions (e.g., directed at communities or regions using a range of media, delivered in a number of settings) are more likely to be effective in bringing about population health gains than ‘single-issue’ initiatives (e.g., directed at individuals or small groups, using fewer media, delivered in a particular setting), but are much harder to evaluate. This requires paying attention to ‘the way in which the intervention is delivered and the characteristics of a program to promote implementation’ as well as its impact. This approach has been adopted for interventions addressing health inequalities where the characteristics of successful interventions include systematic and intensive approaches to delivering effective health care, improvement in access and prompts to encourage the use of services, strategies employing a combination of interventions, and those involving a multidisciplinary approach.

In the area of peer-delivered health promotion interventions for young people, well-designed impact evaluations show mixed evidence about impact. Process evaluations offered explanations and suggested characteristics of an effective model of peer-delivered health promotion by drawing on people’s views that were more illuminating by generating evidence of negative views about peer education and of conflicts between schools and the idea of young people and adults working in partnership. Remaining questions, including what constitutes a credible peer (similar ages, backgrounds, or experiences), can only be answered by working with young people, as well as for them.

Making Change Happen

Once research evidence is available, the next step for public participation is in planning evidence-informed public health services. People may be involved in choosing which research findings are most important to act on, choosing and partaking in particular activities to get research findings into practice, and evaluating such initiatives. Much of this is collective involvement in setting and monitoring of health-care standards and in the development and use of practice guidelines. Public involvement in audit has been officially endorsed in the United Kingdom for some time but is still not widespread, and their contributions have, for various reasons, tended to be limited, with many initiatives comprising little more than service user satisfaction surveys.

Recommendations for public collaboration or consultation for developing practice guidelines are largely inferred from studies in related areas. They include better reporting of values and judgments influencing decisions and the anticipated consequences of alternate choices. There is also a need for adaptable templates for use in guideline development that allow for integration of different values to be developed and used when differences in values are likely to be critical to a decision.

Successful partnerships for making change happen are likely to require early and continuing involvement of people who can speak from the perspectives of health service users and whether they are well-informed about technical issues. The challenges of the multidisciplinary working that is required for developing practice guidelines are increased when teams include people not trained in public health, clinical care, or research. Inherent professional hierarchies and mutual ignorance of different professionals’ skills and ways of working mean that skilled leadership and adequate time are required to ensure that everyone involved actively participates in guideline development. These issues become more important when patients are involved in guideline development groups: the asymmetry of information, the perceived status of health-care professionals, and the technical discussions involved in guideline development make it difficult for patients to contribute actively.

Very different from the public health-led efforts of practice guidelines are community-led initiatives to make a difference. For example, in a disadvantaged Glasgow suburb, the community recognized the threat to public health of children’s accidental injury, invited and coproduced research, and were instrumental in service developments arising from it (Rice et al., 1994). On a national scale, birthing mothers and campaigning groups have made use of systematic reviews in obstetrics.

On an individual level, people engaged in their own personal health decisions may find themselves, perhaps even unwittingly, in efforts to implement research findings. The longest-standing approach to public participation in public health is the passive involvement of individuals faced with public health interventions. Persuasive information-giving approaches have been used with some success in attempts to fully implement immunization programs and to encourage uptake of preventive health-care services among adult populations.

The gap between research and policy or practice is not only bridged by starting with the research. A complementary interactive approach that deserves more attention is the transfer of policy, practice, and personal knowledge to shape research, with the aim of creating a demand for subsequent findings. Thus, logically, public participation in the previous steps of assessing health needs and developing and evaluating the impact and appropriateness of solutions will smooth the way for making good use of the research findings.

Research/Service Cycles

The examples above each address public participation at a particular stage in the research/service cycle: assessing health needs, developing and evaluating solutions and how they operate, and making change happen. The Department of Health in England recently funded an initiative to ensure high-quality screening services for babies and their parents in partnership with health professionals and parents that covered the whole cycle. Research evidence and experiential knowledge held by professionals and parents was combined in order to establish longer-term outcomes of screening, set standards for the service, and make change happen by developing information and training for parents and professionals. How the different types of evidence and experience were combined, using an array of needs assessment methods, consensus development exercises, and formative and summative evaluations has been described for the task of developing evidence-based, culturally sensitive parent information (Stewart et al., 2005).

Participatory action research is another way of addressing the whole research/service cycle in partnership with people who are directly involved in either delivering or being offered an intervention. It has a long, international history in public health and focuses on research whose direct purpose is to enable action. Action is achieved through a reflective cycle, whereby participants collect and analyze data and then determine what action should follow. The resultant action is then further researched, and an iterative reflective cycle perpetuates data collection, reflection, and action as in a corkscrew action. Participatory action research pays careful attention to power relationships, advocating for power to be deliberately shared between the researcher and the researched: blurring the line between them until the researched become the researchers. The researched cease to be research ‘subjects’ and become partners in the whole research process, including selecting the research topic, data collection, and analysis and deciding what action should happen as a result of the research findings.

More innovative is the idea of using participatory action research methods to manage a program of more conventional intervention assessment. The NHS Health Technology Assessment program introduced a policy of public involvement in deciding what research should be commissioned to assess the costs, effectiveness, and broader impact of health technologies. Three successive action research cycles spanning nine years so far have piloted, refined, and evaluated public involvement. The result is continually improving procedures that are having a real influence on the focus of controlled trials and systematic reviews of health service interventions; this ultimately influences the evidence available to inform policy and service planning across the country and by research users internationally.

Accumulation And Interpretation Of Knowledge

Potential influence is greatest where public involvement, as in the Health Technology Assessment program, is in generating research knowledge that is generalizable and widely accessible. In terms of potential output and international endeavor, even more influence can be expected through the Cochrane Collaboration. The Cochrane Collaboration is an international not-for-profit and independent organization, dedicated to making up-to-date, accurate information about the effects of health care readily available worldwide. It produces and disseminates systematic reviews of health-care interventions and promotes the search for evidence in the form of clinical trials and other studies of interventions. Its Consumer Network contributes to developing Cochrane systematic reviews of best evidence in health care and to utilizing this evidence. Members of the network can be involved in any stage of preparing a systematic review, from deciding the topic, in terms of the interventions, populations, and outcomes to be addressed, to conducting the review and interpreting the findings.

Does Participation Work?

The success of public involvement in policy and research can be judged in both political and scientific terms. Political support is apparent from widespread public participation policies at local, national, and international levels. Evidence of the impact of participation has been collated by systematic reviews of the international literature. The first review, addressing the involvement of patients in the planning and development of health care, found no comparative studies. On the basis of 42 observational reports, the authors concluded that involving patients has contributed to changes in service provision, but the effects of these changes on quality of care have not been reported (Crawford et al., 2002). A subsequent review addressing public involvement in research agenda setting relied on similarly weak evidence of effects to suggest promising approaches (Oliver et al., 2004). A more rigorous review, despite its broad scope spanning public involvement in developing health-care policy and research, clinical practice guidelines, and patient information material, found only five randomized controlled trials. This provided no strong evidence of the effects of public involvement in health-care decisions at the population level. Although generalizable lessons could not be learned from studies that differed in terms of interventions, aims, outcomes, and rigor, this review demonstrated that randomized controlled trials are feasible for providing evidence about the effects of public involvement.

Making Public Participation In Public Health Happen

This research paper began by defining key terms for public participation in public health: the nature of public health, public participation, and their relationship with research. It then addressed questions about who of many publics is involved and how, before considering during what aspects of the public health service/research cycle this participation might occur. In practice, the reverse is required. Making public participation happen starts with considering its purpose and the specific nature and context of the task that requires their participation, in order to judge which of the many publics have the most relevant knowledge and experience for that task, and what approaches would best support their involvement in that task.


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