Consulting about consulting: challenges to effective consulting about public health research

Abstract

Objective To understand barriers to obtaining input from consumers in developing public health research.

Methods Documentation of a failed attempt at consumer consultation supplies information on barriers to effective involvement and conditions that must prevail to improve consultation.

Results People are keen to be heard in the formulation of health research. However, competing demands and limited resources make it difficult for community groups to allocate scarce resources to consultation. Sometimes research issues may seem ‘academic’ and thus remote from the urgent priorities of the people with whom researchers wish to consult. Consultation may require more time than researchers on limited budgets can afford.

Conclusions Despite a general public health commitment to involving consumers in research development, obstacles to consultation make it difficult to incorporate it into the research agenda.

Implications Researchers and funding bodies will need to allocate resources to consumer consultation if it is to become the rule rather than the exception in public health research.

Introduction

Public health researchers are enjoined to begin ‘where the people are’ ¹ in designing and conducting research, and there are several good reasons for such starting points. Sometimes community involvement is a necessity. For example, by definition action research requires participation of the people being studied. Terms of reference for funding may require consumer involvement on the research team or other forms of consultation. In any event, the people whose health is at stake ² have valuable understandings of issues and priorities that can give researchers rich insights and fresh perspectives. Some attention has been paid to public participation in health policy and health services provision, ³ , ⁴ , ⁵ but there has been much less focus on how people might contribute in developing public health research. Although some of the issues are similar and they may employ similar methodologies, researchers face distinctive challenges engaging the public, and different consequences if they fail to do so.

A pattern of ignoring the concerns of the people studied has generated scepticism and community hostility to health research, especially among indigenous people. Furthermore, lay knowledge sometimes disputes the knowledge produced by academics, ⁶ so researchers ignore it at their peril. Finally, the practicalities of much data collection necessitate strategic advice from people with insider knowledge about research sites.

While many public health researchers want to involve consumers in developing priorities and strategies for research, they also need a capacity to make good on their commitment. We encountered numerous obstacles in an effort to consult with consumers about proposed public health research. Here, we outline what we attempted, what happened, and what lessons we learned from the process. In public health as in other scholarly areas, there is a tendency to publish only successes and hide the failures. Reflecting on our experience has highlighted the lack of open discussion about these issues in academic journals.

Where did we start?

Renewed international interest in the social determinants of health ⁷ , ⁸ , ⁹ , ¹⁰ prompted a team based at Australia’s National Centre for Epidemiology and Population Health to begin discussing the possibilities for a multidisciplinary research project to examine the relationship between work organization, family life and health. On the basis of burgeoning scholarly literature, union activity and government interest, ¹¹ we formulated preliminary ideas on which we wanted input from people like those who would participate in an eventual study. We were keen to know whether they found the issues we identified personally salient, what it would be like for them to be ‘subjects’ of the research, and what methodologies would be feasible for various participants.

What did we do?

To begin obtaining such input, we planned a consumer workshop to help us identify the issues which local workers and people not in paid work considered relevant to their work, family relationships and health. The 1‐day workshop was designed to provide participants with background about the proposed research, engage them in discussion about their concerns and move towards identifying questions for research. We hoped that some of the participants would develop an interest in collaborative research.

A member of the team (JG) with extensive experience in health consumer consultation and advocacy established the contacts. At this preliminary stage we agreed to target people through community, union and employer groups. Beginning 2 months before the workshop date, 20 organizations were contacted by phone. We explained the workshop and noted the contact person and any views they expressed in relation to the project. Specifically, we contacted: seven community service organizations, five health consumer groups, three unions, three employer organizations, one local government agency and two self‐employed individuals.

Two of these groups represented rural and regional interests, two groups represented youth interests, one specifically targeted Aboriginal people and two had a particular focus on work‐based injuries. In addition, two self‐employed individuals were also contacted, one of whom readily agreed to participate.

Of the 20 initial contacts, five either did not respond, or indicated that they were not interested. Fifteen organizations expressed a willingness to help by identifying potential participants. Five weeks before the workshop, we sent them a follow‐up letter outlining in general terms the purpose of the workshop, the time and venue and indicating that some financial support was available for participants’ expenses. An application form explained that we wanted ‘a mix of people with a wide variety of experience relating to work, family and health’ and invited applicants to write a few lines on the topics they were concerned about. We even established criteria for culling what we naively anticipated could be an excess of applications.

When we had received only one application near the closing date, most of these contacts were followed‐up by phone, and their comments about obstacles to participation for their organization or the individuals were noted. Despite the follow‐up, it was evident that very few people would attend, so the workshop was cancelled.

What did people say?

On the initial contact most people were enthusiastic about the concept of their members or clients being involved in the project and many spoke at some length about issues they themselves identified. These overwhelmingly concerned stress and long working hours for those who had jobs, and the difficulty of ‘working the system’ for those who did not. One woman in a small business said ‘People need to understand the hours we work… and what happens to our families. We do it for them [families] but I sometimes wonder’. A union official said ‘We should send our own staff along. We are stressing our own staff with the workloads’. The organizations who said they would not be involved explained that the activity was not within their current agreed priorities.

The follow‐up calls elicited explanations about the contacts’ own workloads and/or the lack of apparent relevance to or interest from the individuals they targeted. ‘It dropped to a low priority because of other activities.’‘Sorry we haven’t been able to help.’‘These people are on the edge. They probably have the capacity but they don’t have the energy or interest in moving outside their day to day circumstances to talk about issues.’ Some had distributed the information and had expected individuals to apply directly so they had no particular information to offer regarding the follow‐up.

Several contacts were telephoned after the workshop was cancelled, seeking their feedback about the project and the process. Some saw the failure as a result simply of the pressure people were under. These organizations were themselves having trouble maintaining participation in their own activities. We asked whether alternative times or venues, or other mechanisms for consulting, might help, and although a few offered suggestions, no clear preferences emerged.

What did we learn?

Consulting about consulting

Apparently before a consultative process could succeed, we would need to consult about the process itself. What we were attempting through this process is a novelty for the groups involved and perhaps for the public more generally. They are not used to having researchers consult with them in this manner, so the process itself was unfamiliar and may have lacked credibility. That problem was probably compounded by the fact that we were interested in talking about conditions at work, while many of them were concerned about job insecurity, making our topic seem like a frivolous luxury: when unemployment looms, the work environment takes low priority.

There’s no substitute for time

They were also pressed for time. Comments from the organizations make clear that to succeed, we needed more time and resources to develop rapport, trust and credibility with various representatives by a series of individual meetings. Credibility on consumer consultation must be built up progressively, using not only consultation, but also feedback mechanisms through which progress and results can be communicated. The difficulty lies in attracting funding for longer term networking which does not yield immediate publishable results. We had, in fact, applied – unsuccessfully – for a small grant to do exactly that.

What’s in it for them?

Not every research project lends itself to participatory action research. While there are many examples of consumer interest groups emerging spontaneously over issues of environmental contamination, service delivery problems or particular diseases, broader sociological questions provide a less obvious focus for consumer ownership. There was no clear motivation for consumers to participate in our consultation, which could not promise to yield benefits for them, even though as public health researchers we intend our research to contribute eventually to improved health. Busy consumer representatives are entitled to expect some return on their investment of time.

There are both ethical and practical reasons for consulting with consumers about priorities and strategies for public health research. Despite a general public health commitment to involving consumers in research development, obstacles to consultation make it difficult to incorporate it into the research agenda. Researchers and funding bodies will need to allocate resources to consumer consultation if it is to become the rule rather than the exception in public health research.