Abstract
Background: Deliberative public engagement has been proposed for policy development, where issues are complex and there are diverse public perspectives and low awareness of competing issues. Scholars suggest a range of potential outcomes for citizens and government agencies from involvement in such processes. Few studies have examined outcomes from the perspective of citizen participants in deliberative processes. Aims: To examine 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 deliberative forum on biobanking. Results: From their involvement in the deliberative exercise, participants described transformations in their knowledge and beliefs about the policy issues. They reported being more informed to the extent of having confidence to educate others and effectively contribute to public policy development. They had developed greater trust in government policymakers who they believed would take reasonable account of their recommendations. Conclusion: We conclude that the participants were satisfied with the outcomes of the deliberative public engagement process and viewed it as an effective means of citizen involvement in public policy development. Particularly for citizens who participate in deliberative processes, such processes may promote active citizenship, empower citizens to undertake representative and educative roles, and improve relations between citizens and government agencies. Actions taken by policymakers subsequent to the deliberative 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
Several studies have critically assessed the outcomes of deliberative processes with respect to the development of genomics policies, including those in the area of biobanking (Burgess et al., 2008; O'Doherty et al., 2012). We have previously reported on the perspectives of the commissioning agency, which initiated a forum designed to inform government policy on biobanking (Molster et al., 2012, 2013). In this article, we use a case study approach to explore the outcomes of the biobanking deliberative forum from the participants' perspective. Specifically, we explored how participants perceived the deliberative exercise in terms of its design, their role as active citizen representatives in developing public policy, the impact on their knowledge of and beliefs about the public policy issue, and the impact on citizen-government relations in terms of their trust in the commissioning government agency.
Materials and Methods
Background and participants
To explore citizen perspectives for the development of state-wide guidelines on the public health policy issue of biobanking in Western Australia, a 4-day deliberative forum (held across two weekends) was implemented by the Office of Population Health Genomics, a public policy unit within the Department of Health in Western Australia. The forum design was modeled on a similar approach developed at the W. Maurice Young Centre for Applied Ethics, University of British Columbia (Burgess et al., 2008). The deliberative process was designed to involve a minipublic representative of the range of citizen perspectives on the policy issue (Goodin and Dryzek, 2006), provide information framed to present different perspectives and invite deliberation (Walmsley, 2009), and implement a fair method for participants to reflect on different perspectives and collectively make decisions.
The participants were advised that the intention was for them to develop recommendations on how biobanking should operate in Western Australia. Deliberative theory suggests these recommendations should reflect shared values (Burgess, 2004) and identify points of consensus and points of disagreement (Gastil and Levine, 2005; Niemeyer and Dryzek, 2007-2008). Before the forum, participants were sent a 36-page information booklet (available on request from the corresponding author) that provided information on the policy issues around genetics and biobanking. The information was drawn from peer-reviewed articles, gray literature, and media articles, and framed to present differences in multiple perspectives on the policy issues (Walmsley, 2009). The booklet included a glossary of terms and technical jargon, was written in 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 sessions on their perspectives on the policy issue. Small and large group discussions were led by an experienced independent academic facilitator. Fifteen adult citizens and one participant observer (an independent researcher) attended the first weekend and all, but one participant returned for the second weekend. A more detailed description and evaluation of the design of the forum has been reported elsewhere (Molster et al., 2013).
Data collection
Postforum, semistructured interviews were undertaken to obtain participants' perceptions. Guiding questions targeted aspects of the deliberative process and outcomes. General questions also allowed participants to raise topics they considered relevant. Before consenting to the interviews, forum participants were advised that the interviews would be audiotaped, transcripts de-identified, and no identifying information made publicly available. Two researchers, independent from the commissioning agency, conducted the interviews that were carried out at a location of the participants' choice, in the 2 weeks following the forum to increase the likelihood of participants clearly recalling details of their participation. The interview length varied between 30 min and 1 h. Most interviews were conducted in a public place such as a library or café. Thirteen of the fifteen forum participants completed interviews. One participant declined to be interviewed and another was unavailable during the interview timeframe.
Analyses
Interpretation of the data was achieved through an inductive approach, whereby transcripts of the interviews were clustered into themes. Two researchers read through all of the transcripts twice for familiarity, then independently analyzed and coded each speech act into descriptive themes (speech acts could have multiple codes). The meaning of each code was then discussed by the researchers. Inconsistencies were discussed and the transcripts reanalyzed to reach an agreement around the meanings before a final set of themes was identified.
Results
Four major themes were identified from the transcripts: the process design, impact on participants, citizen empowerment, and improving trust in public policy development. No one theme is entirely discrete and vignettes can serve to illustrate varying aspects of our findings. Together, the themes describe how the participants perceived the design of the deliberative forum, the perceived impact on their knowledge and beliefs about the policy issue, how the forum enabled them to adopt the role of representative citizens, and the way in which trust in the government agency was built through implementation of the deliberative exercise. In most cases, the number of participants who mentioned each theme is reported. The remaining participants did not express the theme and are assumed to hold no strong opinion on the topic.
Design of the forum
Interview participants were asked to offer opinions about the deliberative forum and what aspects they felt contributed positively or otherwise to the quality of their discussions and decision making. Overall, the participants were satisfied with their experience and willing to be involved in a similar forum should they ever be offered the opportunity to participate again.
Thoroughly enjoyed it and absolutely would put my hand up again to do it again. (Participant 6)
The information booklet distributed before the forum was read by all of the participants and universally commended as a positive, “easy to read,” “useful,” “helpful” primer containing “a lot of good basic information” about biobanks and policy issues. Presentations at the forum were commonly described as “useful” or “very important” for presenting information about the varying range of scientific, practical, and ethical views about biobanks.
I also thought it was really good to hear perspectives from someone that has a disability or a special need, because that perspective was quite different and because she described how you might be selected [to participate in a biobank]…and I thought the way they went about that was quite shocking. It was important to hear that because if you want to make a change or change needs to occur, then you have to say what it's been like in the past. (Participant 1)
Four participants remarked the information sources (booklet, presentations) “too favorably” supported biobanks, and expressed a desire for more information from people with concerns or “negative” views. These included how people with particular cultural or religious beliefs may view the collection, storage, and use of biological samples.
We didn't really talk about [the] cultural side of things…only a tiny bit about religion but we didn't really do that either, that bothered me for a bit. (Participant 1)
In terms of the deliberations, all participants reported they had opportunities to express their opinions and felt comfortable communicating different points of view and disagreeing with the positions stated by others. Several participants believed some topics of discussion were “a little bit rushed” and that in these instances they had to quickly come up with a response that had not been thoroughly debated and discussed. The facilitators were universally praised for bringing the conversation back on track when it diverged, remaining impartial, encouraging everyone to speak, and providing information and answering questions raised by the participants during the deliberation process.
Impact on knowledge, beliefs, and behaviors
Participants in the forum found that the design permitted them to acquire knowledge about the policy issue and different perspectives. Most considered learning about the policy issues and understanding different points of view to be among the best aspects of the forum.
Just about everything I know about biobanks [I learned during the forum]…it was an enormous learning experience for me. (Participant 8)
Participants indicated learning and knowledge acquisition occurred through several avenues, including the information booklet and presentations, but in particular through the discussions with fellow participants that provided opportunities to look in new or alternative ways at the policy issues.
I think discussing it [was how I learned of other views]. The more you discuss…sometimes you'd think, oh no, I don't know whether I agree with that, but then you listen to each other's comment and then you'd think, well maybe…I can come to think, that might be an idea. So it's just listening and getting everybody's ideas. Or, no I don't agree with that and I'm not ever going to agree with that. (Participant 4)
I suppose the thing that stood out for me most was how so many disparate people can actually go through a process of learning from each other but also learning completely new information and being able to take it on board. (Participant 2)
Participants perceived that their beliefs about the policy issue had been changed through their participation in the forum. Nine participants indicated that participating in the forum had shifted their views on biobanking. Five participants indicated they became more positive about biobanks, two more negative, and two indicated some issues became more important as time progressed. Most of the participants who reported changes in their views on biobanks also reported that with reflection and deliberation their understanding of biobanks became more realistic. They also acknowledged that the biobank policy was complex and multidimensional and that the information provided and their deliberations had enabled them to take into account the range of competing public and scientific research interests within a policy framework.
And perhaps what shifted also was the realisations that unlike the broad perspective from the media that you're going to get these wonderful big improvements [from medical research] and you put the money in, it's going to change the world, realising that those improvements might not come or they might be very slow and that perhaps the money is better put into other areas. So it kind of shifted [my] thinking. (Participant 2)
Three participants indicated they had re-evaluated previous personal experiences in light of their learnings at the forum and realized that they were previously relatively uninformed about health-related practices in which they had participated. Others indicated how the knowledge they gained about the policy issue has or might impact on future interactions with the health system.
I will continue to learn about biobanks because when things come up, I will just tune into it. Whereas before I didn't…last week I went and had a mammogram done and when I'm reading the consent form I'm actually reading a bit closely now. And it is different to you now…yes, you can send that information back to my doctor, yes, you can keep me on a register so you contact me in two years time. (Participant 6)
Role as a citizen representative
The participants took their participation in the deliberative engagement forum seriously, first, by making a significant time commitment to the forum. Not only had they volunteered four full days for participation, but also all of the time required to prepare for the deliberation. Six participants expressed appreciation at the opportunity to be meaningfully engaged in public policy making and to enact a form of citizenry that they perceived was not always available to members of the public.
I was impressed by the opportunity to participate in that sort of community forum where we had the opportunity to feel like you're making a contribution…I just think that the way that politics works in this country most people don't get actively or directly involved in having a say…(Participant 12)
Eight participants openly expressed a sense of achievement or pride as a result of their participation in the forum; they felt satisfied that they had done something worthwhile in representing the community or society. The remaining participants did not make any mention of a sense of achievement or pride.
… How we all came together, we all worked towards a common cause and then the outcomes of it.…maybe we did some good? I thought so and I was pleased that we were able to do something for the community. (Participant 13)
Participants also reflected upon their role beyond the deliberative forum, particularly as conduits for disseminating information on the policy issue within the broader community. Four participants reported greater confidence in talking with others about the forum topics, feeling more competent to raise awareness in others, and believed they had adopted the role of educators in their social networks.
I don't think it's the end of the process…This enlightens little areas that when we talk with people and things will come up in dinner parties or whatever and some bits of information will get out. (Participant 9)
Improving public-government relations
One of the potential outcomes of deliberative public engagement exercises for participants and policymakers is an improved public-government relationship. This seemed the case for eight participants who felt appreciated by the forum organizers and commissioning policymakers and that their participation and opinions were valued. This overcame initial expectations of two participants that tokenism was driving the deliberative exercise.
… at first you think…you're just a token person but when you got there you weren't made to feel like that, it started to become noticeable that it was actually important and they really appreciate you being there and that you're still there…I can't imagine they'd go to all that effort for a waste of time. (Participant 1)
Ten participants expressed positive views about the commissioning agency and identified trust in the commissioning agency as an outcome of the forum.
And I said to anyone, if you get a phone call about being part of it, something for the Department of Health, then knock yourself out to get there ‘cause it's great. (Participant 6)
In particular, there was trust that the participants' recommendations would be genuinely used in a positive way to inform policy. This was influenced by positive perceptions of the time and effort put into the forum, by the attendance of the policymakers at the forum, and by the way organizers and policymakers spoke to and treated the participants.
[It] seems like a lot of work for a rubber stamp, I'm sure you could have rubber stamped it easier. (Participant 10)
Discussion
From the participants' perspective, the deliberative forum was effective as a means of citizen engagement in public policy development. As with previous studies in the health sector, 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 was attributed by the participants to the information presented to them and their discussions with each other. The importance of access to information resources has been noted in evaluation studies and frameworks for deliberative exercises (Einsiedel, 2002; Einsiedel and Ross, 2002; Abelson et al., 2003b; Abelson et al., 2004; Rowe et al., 2004). We believe that the positive participant 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 in plain English and in multimedia formats (written, pictorial, and oral). Further, information was framed for difference and deliberation by being as objective as possible in the inclusiveness of a wide range of perspectives on the policy issues (Walmsley, 2009), ranging from factual, scientific information to personal experiential perspectives. This provided not only factual input to deliberation, but also what scholars have described as type II forms of communication such as storytelling and emotional discourse (such as that presented by the biobank participant and discussed by the deliberants) (Bachtiger et al., 2010).
In addition, reflecting the findings of other studies, the participants indicated that the group discussions were particularly valuable (Abelson et al., 2003b; Timotijevic and Raats, 2007). They indicated that the deliberative process enabled them to hear alternative positions to their own, then to express opinions, reason with others about their positions, transform their positions based on their exposure to and deliberation about other perspectives and thereby to reach what has been described as metaconsensus (Niemeyer and Dryzek, 2007-2008), that is, agreement about the nature of the policy issue. Similar outcomes, such as transformed policy preferences, engagement in reasoning and arrival at consensus, have been noted for other deliberative exercises in the health and 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 procedural legitimacy of the forum design (Smith and Wales, 2000; Abelson et al., 2003b; Niemeyer and Dryzek, 2007-2008) and for claims that ordinary citizens have the capacity to understand complex issues like biobanking and discuss these in a deliberative way (Bennett and Smith, 2007; Hartz-Karp, 2007).
For the participants in the deliberative exercise, our findings also point to a number of outcomes related to their role as members of the community. In particular, feelings of confidence to educate other citizens and a greater sense of community are consistent with other findings that deliberative processes can promote active citizenship and citizen empowerment in the broader community (Beierle, 1999; Goodin and Dryzek, 2006; Hartz-Karp, 2007; Menon and Stafinski, 2008; O'Doherty et al., 2012). This takes the short-term impact of the deliberative exercise beyond the immediate interests of those involved into the system or society as a whole. Further research would be useful to assess the ongoing societal impact of deliberative exercises, for example, the extent to which participants transfer knowledge to their social networks.
Finally, our findings provide evidence that improved relations between citizens who participate in deliberative exercises and state institutions may be an achievable outcome of deliberative public engagement methods (Beierle, 1999; Delli Carpini et al., 2004). In our case, the participants indicated an increased trust in the commissioning government agency as a result of their participation in the deliberative forum, in particular, trust to effectively use their recommendations as input to the policy development process. Importantly, the participants attributed their increased trust to factors such as the positive engagement with forum organizers and policymakers and the level of resources allocated to the deliberative exercise. Scholars have acknowledged the potential influence of such features on the development of trust (Smith and Wales, 2000). This inherently raises questions about the relationship between deliberative design and outcomes. For example, in circumstances where fewer resources are available for planning and running a deliberative public engagement, how would this impact on the perceived genuineness of the deliberative exercise?
It might also be useful to understand which factors (if any) contribute to the maintenance over time of any increased trust in state institutions. In the current case study, we believe that actions taken by policymakers subsequent to the deliberative exercise may have contributed to participants holding sustained levels of trust in the commissioning government agency. To translate the participants' recommendations to policy, a process was undertaken whereby a policy document was drafted, which included the majority of the participants' recommendations (Molster et al., 2012). The draft policy was circulated to all participants who were invited to comment verbally or in writing on the extent to which they thought their recommendations were included (or not) in the policy. In this manner, the participants were given the opportunity to see that most of their recommendations were included, thereby honouring the trust that they had in the commissioning agency to genuinely consider their recommendations.
The extent to which the deliberative event has or has not increased trust among citizens who did not participate in the event is unknown. This is a limitation of our study, particularly in terms of legitimacy of the deliberative event if nonparticipants did not experience similar improvements in trust (Parkinson, 2003). We can only speculate that some improvement in trust among nonparticipants may have occurred, through avenues such as the participants discussing with nonparticipants (e.g., family and friends) the deliberative event, the representation of the event positively in an article in Western Australia's daily newspaper (O'Leary, 2009), and discussions between event organizers and policy users about the deliberative event and its impact on policy development, However, full consideration of any increased trust among nonparticipant citizens is beyond the scope of this case study.
In conclusion, the participant perspectives of the deliberative exercise discussed in this article are consistent with the perspectives of forum organizers and policymakers within the commissioning agency, which we have previously reported (Molster et al., 2013). On the basis of our findings, we conclude that well-designed, theory-driven deliberative exercises can be a legitimate, effective, and worthwhile means of consulting citizens on policy issues that have complex and contested ethical and social dimensions. Furthermore, the outcomes of such exercises can be achieved for both the participants in the deliberative public engagement and the commissioning agency.
Footnotes
Acknowledgments
The citizens who participated in the deliberative forum are gratefully acknowledged. Similarly, we are indebted to our collaborators for providing advice and guidance in the design of the deliberative exercise.
Author Disclosure Statement
No competing financial interests exist.