Informing Public Health Policy ThroughDeliberative Public Engagement:Perceived Impact on Participants

and Citizen–Government Relations

Caron Molster,1 Ayla Potts,1 Beverley McNamara,2 Leanne Youngs,1 Susannah Maxwell,1

Hugh Dawkins,1,3,4 and Peter O’Leary3,4,5

Background: Deliberative public engagement has been proposed for policy development, where issues arecomplex and there are diverse public perspectives and low awareness of competing issues. Scholars suggest arange of potential outcomes for citizens and government agencies from involvement in such processes. Fewstudies have examined outcomes from the perspective of citizen participants in deliberative processes. Aims: Toexamine participant perceptions of their involvement in and outcomes of a deliberative engagement exercise.Method: A case study using semistructured interviews was conducted with participants following a deliberativeforum on biobanking. Results: From their involvement in the deliberative exercise, participants describedtransformations in their knowledge and beliefs about the policy issues. They reported being more informed tothe extent of having confidence to educate others and effectively contribute to public policy development. Theyhad developed greater trust in government policymakers who they believed would take reasonable account oftheir recommendations. Conclusion: We conclude that the participants were satisfied with the outcomes of thedeliberative public engagement process and viewed it as an effective means of citizen involvement in publicpolicy development. Particularly for citizens who participate in deliberative processes, such processes maypromote active citizenship, empower citizens to undertake representative and educative roles, and improverelations between citizens and government agencies. Actions taken by policymakers subsequent to the delib-erative exercise, whereby the majority of citizen recommendations were incorporated in the policy developed,may have contributed to participants holding sustained levels of trust in the commissioning government agency.

Introduction

Deliberative public engagement has been applied inhealth and bioethical contexts as a mechanism for in-

forming public policy, particularly when issues encompassethical and social dimensions, competing public interests,diverse stakeholder perspectives, and low citizen awareness(Abelson et al., 2003b; Tansey and Burgess, 2006; Burgess et al.,2008; Avard et al., 2009). Ideally, deliberative public engage-ment involves transparent and accountable processes,whereby members of the public become more informed aboutpolicy issues, reason with each other about contestable ideas,and work collectively toward a consensus position (Smith andWales, 2000; Ankeny and Dodds, 2008). Provided these pro-

cesses and impacts are achieved, the outcome for policy-makers should be valid policy advice from members of thepublic that takes into account trade-offs between competingpublic interests and perspectives. Potential outcomes forparticipants include more active citizenry through and be-cause of engagement in public policy development (DelliCarpini et al., 2004), transformed policy preferences (Nie-meyer and Dryzek, 2007–2008), and perceived improvementsin public–government relations through increased trust instate institutions (Beierle, 1999).

Several studies have critically assessed the outcomes ofdeliberative processes with respect to the development ofgenomics policies, including those in the area of biobanking(Burgess et al., 2008; O’Doherty et al., 2012). We have

1Department of Health, Office of Population Health Genomics, Perth, Western Australia, Australia.2Faculty of Health Sciences, School of Occupational Therapy and Social Work, Curtin Health Innovation Research Institute, Curtin

University, Bentley, Western Australia, Australia.3Faculty of Health Sciences, Centre for Population Health Research, Curtin Health Innovation Research Institute, Curtin University,

Bentley, Western Australia, Australia.4School of Pathology & Laboratory Medicine, University of Western Australia, Perth, Western Australia, Australia.5School of Women’s & Infants’ Health, University of Western Australia, Perth, Western Australia, Australia.

GENETIC TESTING AND MOLECULAR BIOMARKERSVolume 17, Number 9, 2013ª Mary Ann Liebert, Inc.Pp. 713–718DOI: 10.1089/gtmb.2013.0044

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previously reported on the perspectives of the commissioningagency, which initiated a forum designed to inform govern-ment policy on biobanking (Molster et al., 2012, 2013). In thisarticle, we use a case study approach to explore the outcomesof the biobanking deliberative forum from the participants’perspective. Specifically, we explored how participants per-ceived the deliberative exercise in terms of its design, their roleas active citizen representatives in developing public policy,the impact on their knowledge of and beliefs about the publicpolicy issue, and the impact on citizen–government relationsin terms of their trust in the commissioning governmentagency.

Materials and Methods

Background and participants

To explore citizen perspectives for the development ofstate-wide guidelines on the public health policy issue ofbiobanking in Western Australia, a 4-day deliberative forum(held across two weekends) was implemented by the Office ofPopulation Health Genomics, a public policy unit within theDepartment of Health in Western Australia. The forum designwas modeled on a similar approach developed at the W.Maurice Young Centre for Applied Ethics, University ofBritish Columbia (Burgess et al., 2008). The deliberative pro-cess was designed to involve a minipublic representative ofthe range of citizen perspectives on the policy issue (Goodinand Dryzek, 2006), provide information framed to presentdifferent perspectives and invite deliberation (Walmsley,2009), and implement a fair method for participants to reflecton different perspectives and collectively make decisions.

The participants were advised that the intention was forthem to develop recommendations on how biobankingshould operate in Western Australia. Deliberative theorysuggests these recommendations should reflect shared values(Burgess, 2004) and identify points of consensus and points ofdisagreement (Gastil and Levine, 2005; Niemeyer and Dry-zek, 2007–2008). Before the forum, participants were sent a 36-page information booklet (available on request from the cor-responding author) that provided information on the policyissues around genetics and biobanking. The information wasdrawn from peer-reviewed articles, gray literature, and mediaarticles, and framed to present differences in multiple per-spectives on the policy issues (Walmsley, 2009). The bookletincluded a glossary of terms and technical jargon, was writtenin plain English, and included pictures, photos, and diagrams.On the first day of the forum, local experts, health advocates,and health consumers presented short information sessionson their perspectives on the policy issue. Small and largegroup discussions were led by an experienced independentacademic facilitator. Fifteen adult citizens and one participantobserver (an independent researcher) attended the firstweekend and all, but one participant returned for the secondweekend. A more detailed description and evaluation of thedesign of the forum has been reported elsewhere (Molsteret al., 2013).

Data collection

Postforum, semistructured interviews were undertaken toobtain participants’ perceptions. Guiding questions targetedaspects of the deliberative process and outcomes. General

questions also allowed participants to raise topics they con-sidered relevant. Before consenting to the interviews, forumparticipants were advised that the interviews would beaudiotaped, transcripts de-identified, and no identifying in-formation made publicly available. Two researchers, inde-pendent from the commissioning agency, conducted theinterviews that were carried out at a location of the partici-pants’ choice, in the 2 weeks following the forum to increasethe likelihood of participants clearly recalling details of theirparticipation. The interview length varied between 30 minand 1 h. Most interviews were conducted in a public placesuch as a library or cafe. Thirteen of the fifteen forum partic-ipants completed interviews. One participant declined to beinterviewed and another was unavailable during the inter-view timeframe.

Analyses

Interpretation of the data was achieved through an induc-tive approach, whereby transcripts of the interviews wereclustered into themes. Two researchers read through all of thetranscripts twice for familiarity, then independently analyzedand coded each speech act into descriptive themes (speechacts could have multiple codes). The meaning of each codewas then discussed by the researchers. Inconsistencies werediscussed and the transcripts reanalyzed to reach an agree-ment around the meanings before a final set of themes wasidentified.

Results

Four major themes were identified from the transcripts: theprocess design, impact on participants, citizen empowerment,and improving trust in public policy development. No onetheme is entirely discrete and vignettes can serve to illustratevarying aspects of our findings. Together, the themes describehow the participants perceived the design of the deliberativeforum, the perceived impact on their knowledge and beliefsabout the policy issue, how the forum enabled them to adoptthe role of representative citizens, and the way in which trustin the government agency was built through implementationof the deliberative exercise. In most cases, the number ofparticipants who mentioned each theme is reported. The re-maining participants did not express the theme and are as-sumed to hold no strong opinion on the topic.

Design of the forum

Interview participants were asked to offer opinions about thedeliberative forum and what aspects they felt contributed pos-itively or otherwise to the quality of their discussions and de-cision making. Overall, the participants were satisfied with theirexperience and willing to be involved in a similar forum shouldthey ever be offered the opportunity to participate again.

Thoroughly enjoyed it and absolutely would put my hand upagain to do it again. (Participant 6)

The information booklet distributed before the forum wasread by all of the participants and universally commended asa positive, ‘‘easy to read,’’ ‘‘useful,’’ ‘‘helpful’’ primer con-taining ‘‘a lot of good basic information’’ about biobanks andpolicy issues. Presentations at the forum were commonlydescribed as ‘‘useful’’ or ‘‘very important’’ for presenting

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information about the varying range of scientific, practical,and ethical views about biobanks.

I also thought it was really good to hear perspectives fromsomeone that has a disability or a special need, because thatperspective was quite different and because she described howyou might be selected [to participate in a biobank].and Ithought the way they went about that was quite shocking. Itwas important to hear that because if you want to make achange or change needs to occur, then you have to say what it’sbeen like in the past. (Participant 1)

Four participants remarked the information sources(booklet, presentations) ‘‘too favorably’’ supported bio-banks, and expressed a desire for more information frompeople with concerns or ‘‘negative’’ views. These includedhow people with particular cultural or religious beliefs mayview the collection, storage, and use of biological samples.

We didn’t really talk about [the] cultural side of things.only atiny bit about religion but we didn’t really do that either, thatbothered me for a bit. (Participant 1)

In terms of the deliberations, all participants reported theyhad opportunities to express their opinions and felt comfort-able communicating different points of view and disagreeingwith the positions stated by others. Several participants be-lieved some topics of discussion were ‘‘a little bit rushed’’ andthat in these instances they had to quickly come up with aresponse that had not been thoroughly debated and dis-cussed. The facilitators were universally praised for bringingthe conversation back on track when it diverged, remainingimpartial, encouraging everyone to speak, and providing in-formation and answering questions raised by the participantsduring the deliberation process.

Impact on knowledge, beliefs, and behaviors

Participants in the forum found that the design permittedthem to acquire knowledge about the policy issue and dif-ferent perspectives. Most considered learning about the policyissues and understanding different points of view to beamong the best aspects of the forum.

Just about everything I know about biobanks [I learned duringthe forum].it was an enormous learning experience for me.(Participant 8)

Participants indicated learning and knowledge acquisitionoccurred through several avenues, including the informationbooklet and presentations, but in particular through the dis-cussions with fellow participants that provided opportunitiesto look in new or alternative ways at the policy issues.

I think discussing it [was how I learned of other views]. Themore you discuss.sometimes you’d think, oh no, I don’tknow whether I agree with that, but then you listen to eachother’s comment and then you’d think, well maybe.I cancome to think, that might be an idea. So it’s just listening andgetting everybody’s ideas. Or, no I don’t agree with that andI’m not ever going to agree with that. (Participant 4)

I suppose the thing that stood out for me most was how somany disparate people can actually go through a process oflearning from each other but also learning completely newinformation and being able to take it on board. (Participant 2)

Participants perceived that their beliefs about the policyissue had been changed through their participation in the

forum. Nine participants indicated that participating in theforum had shifted their views on biobanking. Five partici-pants indicated they became more positive about biobanks,two more negative, and two indicated some issues becamemore important as time progressed. Most of the participantswho reported changes in their views on biobanks also re-ported that with reflection and deliberation their under-standing of biobanks became more realistic. They alsoacknowledged that the biobank policy was complex andmultidimensional and that the information provided andtheir deliberations had enabled them to take into account therange of competing public and scientific research interestswithin a policy framework.

And perhaps what shifted also was the realisations that unlikethe broad perspective from the media that you’re going to getthese wonderful big improvements [from medical research] andyou put the money in, it’s going to change the world, realisingthat those improvements might not come or they might be veryslow and that perhaps the money is better put into other areas. Soit kind of shifted [my] thinking. (Participant 2)

Three participants indicated they had re-evaluated previ-ous personal experiences in light of their learnings at the fo-rum and realized that they were previously relativelyuninformed about health-related practices in which they hadparticipated. Others indicated how the knowledge theygained about the policy issue has or might impact on futureinteractions with the health system.

I will continue to learn about biobanks because when thingscome up, I will just tune into it. Whereas before I didn’t.lastweek I went and had a mammogram done and when I’mreading the consent form I’m actually reading a bit closelynow. And it is different to you now.yes, you can send thatinformation back to my doctor, yes, you can keep me on aregister so you contact me in two years time. (Participant 6)

Role as a citizen representative

The participants took their participation in the deliberativeengagement forum seriously, first, by making a significanttime commitment to the forum. Not only had they vo-lunteered four full days for participation, but also all of thetime required to prepare for the deliberation. Six participantsexpressed appreciation at the opportunity to be meaningfullyengaged in public policy making and to enact a form of citi-zenry that they perceived was not always available to mem-bers of the public.

I was impressed by the opportunity to participate in that sort ofcommunity forum where we had the opportunity to feel likeyou’re making a contribution.I just think that the way thatpolitics works in this country most people don’t get actively ordirectly involved in having a say.(Participant 12)

Eight participants openly expressed a sense of achievement orpride as a result of their participation in the forum; they feltsatisfied that they had done something worthwhile in re-presenting the community or society. The remaining participantsdid not make any mention of a sense of achievement or pride.

. How we all came together, we all worked towards a com-mon cause and then the outcomes of it..maybe we did somegood? I thought so and I was pleased that we were able to dosomething for the community. (Participant 13)

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Participants also reflected upon their role beyond the de-liberative forum, particularly as conduits for disseminatinginformation on the policy issue within the broader commu-nity. Four participants reported greater confidence in talkingwith others about the forum topics, feeling more competent toraise awareness in others, and believed they had adopted therole of educators in their social networks.

I don’t think it’s the end of the process.This enlightens littleareas that when we talk with people and things will come up indinner parties or whatever and some bits of information willget out. (Participant 9)

Improving public–government relations

One of the potential outcomes of deliberative public en-gagement exercises for participants and policymakers is animproved public–government relationship. This seemed thecase for eight participants who felt appreciated by the forumorganizers and commissioning policymakers and that theirparticipation and opinions were valued. This overcame initialexpectations of two participants that tokenism was drivingthe deliberative exercise.

. at first you think.you’re just a token person but when yougot there you weren’t made to feel like that, it started to becomenoticeable that it was actually important and they really ap-preciate you being there and that you’re still there.I can’timagine they’d go to all that effort for a waste of time. (Parti-cipant 1)

Ten participants expressed positive views about the com-missioning agency and identified trust in the commissioningagency as an outcome of the forum.

And I said to anyone, if you get a phone call about being part ofit, something for the Department of Health, then knock your-self out to get there ‘cause it’s great. (Participant 6)

In particular, there was trust that the participants’ recom-mendations would be genuinely used in a positive way toinform policy. This was influenced by positive perceptions ofthe time and effort put into the forum, by the attendance of thepolicymakers at the forum, and by the way organizers andpolicymakers spoke to and treated the participants.

[It] seems like a lot of work for a rubber stamp, I’m sure youcould have rubber stamped it easier. (Participant 10)

Discussion

From the participants’ perspective, the deliberative forumwas effective as a means of citizen engagement in publicpolicy development. As with previous studies in the healthsector, the participants became more informed citizenry(Abelson et al., 2003b; Bennett and Smith, 2007; Bombard et al.,2012) with increased knowledge of the policy issues. This wasattributed by the participants to the information presented tothem and their discussions with each other. The importance ofaccess to information resources has been noted in evaluationstudies and frameworks for deliberative exercises (Einsiedel,2002; Einsiedel and Ross, 2002; Abelson et al., 2003b; Abelsonet al., 2004; Rowe et al., 2004). We believe that the positiveparticipant perceptions of the information provided to them(e.g., easy to read, informative) reflect design choices. That is,the information provided to participants was presented inplain English and in multimedia formats (written, pictorial,

and oral). Further, information was framed for difference anddeliberation by being as objective as possible in the inclu-siveness of a wide range of perspectives on the policy issues(Walmsley, 2009), ranging from factual, scientific informationto personal experiential perspectives. This provided not onlyfactual input to deliberation, but also what scholars havedescribed as type II forms of communication such as story-telling and emotional discourse (such as that presented by thebiobank participant and discussed by the deliberants) (Bach-tiger et al., 2010).

In addition, reflecting the findings of other studies, theparticipants indicated that the group discussions were par-ticularly valuable (Abelson et al., 2003b; Timotijevic andRaats, 2007). They indicated that the deliberative process en-abled them to hear alternative positions to their own, then toexpress opinions, reason with others about their positions,transform their positions based on their exposure to and de-liberation about other perspectives and thereby to reach whathas been described as metaconsensus (Niemeyer and Dryzek,2007–2008), that is, agreement about the nature of the policyissue. Similar outcomes, such as transformed policy prefer-ences, engagement in reasoning and arrival at consensus,have been noted for other deliberative exercises in the healthand bioethical fields (Einsiedel, 2002; Abelson et al., 2003a;Iredale et al., 2006; Bennett and Smith, 2007; De Vries et al.,2010). These outcomes provide support for the procedurallegitimacy of the forum design (Smith and Wales, 2000;Abelson et al., 2003b; Niemeyer and Dryzek, 2007–2008) andfor claims that ordinary citizens have the capacity to under-stand complex issues like biobanking and discuss these in adeliberative way (Bennett and Smith, 2007; Hartz-Karp, 2007).

For the participants in the deliberative exercise, our find-ings also point to a number of outcomes related to their role asmembers of the community. In particular, feelings of confi-dence to educate other citizens and a greater sense of com-munity are consistent with other findings that deliberativeprocesses can promote active citizenship and citizen em-powerment in the broader community (Beierle, 1999; Goodinand Dryzek, 2006; Hartz-Karp, 2007; Menon and Stafinski,2008; O’Doherty et al., 2012). This takes the short-term impactof the deliberative exercise beyond the immediate interests ofthose involved into the system or society as a whole. Furtherresearch would be useful to assess the ongoing societal impactof deliberative exercises, for example, the extent to whichparticipants transfer knowledge to their social networks.

Finally, our findings provide evidence that improved re-lations between citizens who participate in deliberative exer-cises and state institutions may be an achievable outcome ofdeliberative public engagement methods (Beierle, 1999; DelliCarpini et al., 2004). In our case, the participants indicated anincreased trust in the commissioning government agency as aresult of their participation in the deliberative forum, in par-ticular, trust to effectively use their recommendations as inputto the policy development process. Importantly, the partici-pants attributed their increased trust to factors such as thepositive engagement with forum organizers and policy-makers and the level of resources allocated to the deliberativeexercise. Scholars have acknowledged the potential influenceof such features on the development of trust (Smith andWales, 2000). This inherently raises questions about the rela-tionship between deliberative design and outcomes. For ex-ample, in circumstances where fewer resources are available

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for planning and running a deliberative public engagement,how would this impact on the perceived genuineness of thedeliberative exercise?

It might also be useful to understand which factors (if any)contribute to the maintenance over time of any increased trustin state institutions. In the current case study, we believe thatactions taken by policymakers subsequent to the deliberativeexercise may have contributed to participants holding sus-tained levels of trust in the commissioning governmentagency. To translate the participants’ recommendations topolicy, a process was undertaken whereby a policy documentwas drafted, which included the majority of the participants’recommendations (Molster et al., 2012). The draft policy wascirculated to all participants who were invited to commentverbally or in writing on the extent to which they thoughttheir recommendations were included (or not) in the policy. Inthis manner, the participants were given the opportunity tosee that most of their recommendations were included,thereby honouring the trust that they had in the commis-sioning agency to genuinely consider their recommendations.

The extent to which the deliberative event has or has notincreased trust among citizens who did not participate in theevent is unknown. This is a limitation of our study, particu-larly in terms of legitimacy of the deliberative event if non-participants did not experience similar improvements in trust(Parkinson, 2003). We can only speculate that some im-provement in trust among nonparticipants may have oc-curred, through avenues such as the participants discussingwith nonparticipants (e.g., family and friends) the deliberativeevent, the representation of the event positively in an article inWestern Australia’s daily newspaper (O’Leary, 2009), anddiscussions between event organizers and policy users aboutthe deliberative event and its impact on policy development,However, full consideration of any increased trust amongnonparticipant citizens is beyond the scope of this case study.

In conclusion, the participant perspectives of the deliberativeexercise discussed in this article are consistent with the per-spectives of forum organizers and policymakers within thecommissioning agency, which we have previously reported(Molster et al., 2013). On the basis of our findings, we concludethat well-designed, theory-driven deliberative exercises can be alegitimate, effective, and worthwhile means of consulting citi-zens on policy issues that have complex and contested ethicaland social dimensions. Furthermore, the outcomes of such ex-ercises can be achieved for both the participants in the delib-erative public engagement and the commissioning agency.

Acknowledgments

The citizens who participated in the deliberative forum aregratefully acknowledged. Similarly, we are indebted to ourcollaborators for providing advice and guidance in the designof the deliberative exercise.

Author Disclosure Statement

No competing financial interests exist.

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Address correspondence to:Caron Molster, BBus (Hons)

Department of HealthOffice of Population Health Genomics

P.O. Box 8172, Stirling StreetPerth 6849

Western AustraliaAustralia

E-mail: caron.molster@health.wa.gov.au

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