Consulting about consulting: challenges to effectiveconsulting about public health research

Janne Graham BA, Dorothy Broom BA(Hons) MA PhD FASSAand Andrea Whittaker BA(Hons) PhD

National Centre for Epidemiology and Population Health, The Australian National University, Canberra, Australia

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 de®nition 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 stake2 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±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 methodo-

logies, researchers face distinctive challenges

engaging the public, and di�erent 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, especi-

ally among indigenous people. Furthermore, lay

knowledge sometimes disputes the knowledge

produced by academics,6 so researchers ignore it

CorrespondenceJanne Graham

National Centre for Epidemiology and

Population Health

The Australian National University

Canberra ACT 0200

Australia

E-mail: Dorothy.Broom@anu.edu.au

Accepted for publication23 October 2000

Keywords: consumer consultation,

public health research

Abstract

Objective To understand barriers to obtaining input from con-

sumers in developing public health research.

Methods Documentation of a failed attempt at consumer consul-

tation supplies information on barriers to e�ective 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 di�cult 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 a�ord.

Conclusions Despite a general public health commitment to

involving consumers in research development, obstacles to consul-

tation make it di�cult 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.

Ó Blackwell Science Ltd 2001 Health Expectations, 4, pp.209±212 209

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 e�ort 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.

Re¯ecting 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 health7±10 prompted a team

based at Australia's National Centre for

Epidemiology and Population Health to begin

discussing the possibilities for a multidisci-

plinary research project to examine the rela-

tionship 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 identi®ed 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 partici-

pants 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. Speci®cally, we contacted:

seven community service organizations, ®ve

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 speci®cally 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, ®ve either did not

respond, or indicated that they were not inter-

ested. Fifteen organizations expressed a will-

ingness 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

®nancial 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.

Consulting about consulting, J Graham et al.

Ó Blackwell Science Ltd 2001 Health Expectations, 4, pp.209±212

210

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 enthu-

siastic about the concept of their members or

clients being involved in the project and

many spoke at some length about issues they

themselves identi®ed. These overwhelmingly

concerned stress and long working hours for

those who had jobs, and the di�culty of

`working the system' for those who did not. One

woman in a small business said `People need to

understand the hours we work¼ and what

happens to our families. We do it for them

[families] but I sometimes wonder'. A union

o�cial said `We should send our own sta�

along. We are stressing our own sta� 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 infor-

mation and had expected individuals to apply

directly so they had no particular information to

o�er 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 them-

selves having trouble maintaining participation

in their own activities. We asked whether alter-

native times or venues, or other mechanisms

for consulting, might help, and although a

few o�ered 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 condi-

tions atwork,whilemany of themwere 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 di�culty 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 parti-

cipatory 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 ques-

tions 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 bene®ts for

Ó Blackwell Science Ltd 2001 Health Expectations, 4, pp.209±212

Consulting about consulting, J Graham et al. 211

them, even though as public health researchers

we intend our research to contribute eventually

to improved health. Busy consumer representa-

tives 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

consultationmake it di�cult 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.

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