Theatre as a public engagement tool for health-policy development

Health Policy 78 (2006) 258–271

Theatre as a public engagement tool for health-policy development Jeff Nisker a,∗ , Douglas K. Martin b , Robyn Bluhm a , Abdallah S. Daar c b

a Schulich School of Medicine, University of Western Ontario, London, Canada Department of Health Policy, Management, and Evaluations, University of Toronto Joint Centre for Bioethics, Toronto, Canada c Department of Public Health Sciences, University of Toronto Joint Centre for Bioethics, Toronto, Canada

Abstract Purpose: To explore theatre as a public engagement tool for health-policy development. Background: In a justice-based democracy, engagement of a large number of citizens of diverse perspectives is required for legitimate health-policy development. However, all current strategies of citizen participation are limited in their capacity to engage, either by lack of opportunity to educate citizens prior to soliciting their opinions or lack of large numbers of citizens. Methods: A series of 12 nested case studies was conducted, with each case study consisting of a performance of a 70-min play, specifically written to educate citizens to scientific, clinical, and psychosocial issues of adult predictive genetic testing, and to foster empathy for persons immersed therein; and a 1-h audience discussion that was taped and transcribed for qualitative analysis (modified thematic). The script was based on key informant interviews, literature review, and six script readings for key informants and communities. Audience members were recruited through conference or educational event programs, posters, newsletters, and electronic announcements, as well as newspaper advertisements and other public, community and institutional postings. Results: More than 1000 citizens were engaged. The analysis indicated that audience members were engaged emotionally and cognitively in the position of the characters and the health-policy issues. Audience members’ comments forwarded from personal or professional lived experience confirmed the validity of the script and promoted further emotional and cognitive engagement of other audience members. Audience members offered informed and diverse opinions on policy issues, including resource allocation, patenting of genetic tests, research funding, genetic test-based insurance discrimination, and imperative for public education. The potential for harm to key informants and audience members (and those in relationships with them) were observed, usually related to learning or offering personal information regarding their genetic risk. Conclusion: As many citizens can be engaged in theatre-based policy development as surveyed through public opinion polls, and many times the number that can be engaged in strategies that educate citizens prior to soliciting their opinions, likely at a similar cost per citizen engaged. © 2005 Elsevier Ireland Ltd. All rights reserved. Keywords: Health policy; Citizen participation; Theatre; Health-policy research; Public engagement

∗ Corresponding author at: Schulich School of Medicine & Dentistry, University of Western Ontario, Room A9-311, London Health Sciences Centre, University Hospital, 339 Windermere Road, London, Ont., Canada N6A 5A5. Tel.: +1 519 663 3735; fax: +1 519 663 3808. E-mail address: [email protected] (J. Nisker).

0168-8510/$ – see front matter © 2005 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.healthpol.2005.10.009

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1. Introduction

2.2. Instrument

Greater citizen participation in science-policy development has been called for, not only to be consistent with democratic ideals [1–5], but to decrease the public cynicism resulting from closed governmental decision-making processes that could inhibit scientific research and its applications [1,6–9]. However, tools currently used for citizen participation in policy development fall short in many aspects [2,3,5,10]. For example, focus groups and citizens’ juries engage only small numbers of participants [2,3]. Public opinion polls can survey large numbers of citizens, but without any opportunity for the deeper cognitive and emotional understanding that can elicit, in an in-depth manner, the concerns, opinions, and experiences of citizens [2,5,10]. Further, in most current strategies of citizen participation, only a select segment of the public is included [11]. Theatre has a long history of engaging the public in moral, social, and political issues [12–21]. Through theatre, we can “relate the imagined action (happening there) to the ongoing actions of our present situation (happening here), drawing moral, psychological, and sometimes political conclusions” [22]. We can make “sense of the suffering by recognizing that one might oneself encounter such a reversal” [12, p. 316]. Good theatre “provides the audience with possibilities for rich engagement with the issues, but leaves them free to interpret as they wish” [19, p. 1030]. Theatre has educated the public regarding health-care issues [23–34] and has been increasingly used to educate health-care providers [23,24,27,35, 36]. The purpose of this research was to investigate theatre as an innovative tool for public engagement in health-policy development.

The play, Sarah’s Daughters, is the story of a young woman living in fear of hereditary breast cancer. It was performed by the same actor (and the same cellist) in all 12 workshops. The research for the script utilized strategies common to writers, including interviews with key informants, a review of scholarly writings and texts, attention to the popular press and other media, as well as script readings for key informants and communities. Key informants included women with a family history of premenopausal breast cancer, oncogene scientists, physicians (family physicians, oncologists, geneticists), genetic counsellors, nurses, members of the Jewish community, insurance company executives, and members of the general public. The play was designed to incorporate scientific information about the BRCA gene and about the prevention, diagnosis and treatment of BRCA-related breast and ovarian cancer. It also drew on events that occurred in Ontario, Canada regarding the availability of the test for this gene, which was initially offered only in a research context and later was challenged by the company that developed the initial test. By focusing on the story of one woman, her family and her friends, the play also aimed to place the ethical and scientific issues in a context that was accessible and engaging. Preliminary script readings (Table 1) were organized for persons and communities whose insights regarding the sensitivity and accuracy of the script were valued by the playwright/researcher (JN), particularly regarding the portrayal of specific communities, scientific facts, clinical considerations, and the plausibility of the story line regarding the fears, understandings, and choices of the central character. The information and feedback provided by the key informants described above ensured the accuracy of the information presented in the play and also served to minimize the potential for the playwright’s own views to bias the story. The total time required for script preparation from initial interviews to the point where the script was ready to be performed was approximately 1 year. A director, an actor, and a cellist were hired, and 1 week of intensive rehearsals occurred prior to the first workshop. In the following 11 workshops, the actor and playwright/researcher worked out the nuances of staging particular to the venue, usually with a stage manager/light technician.

2. Methods 2.1. Design The study design was a series of 12 nested qualitative case studies, each consisting of a performance of the play specifically written for this research and the ensuing audience discussion.

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Table 1 Script readings SR

Date

Location

No. of participants

Sponsor

Audience

1 2 3

February 2001 March 2001 March 2001

London London Hamilton

48 6 60

Hadassah Playwright Hamilton Regional Cancer Unit

4

March 2001

Vancouver

70

5

March 2001

Vancouver

45

6

May 2001

Hamilton

55

Annual Meeting, B.C. College Physicians & Surgeons/B.C. Medical Association Annual Meeting, B.C. College Physicians & Surgeons/B.C. Medical Association 100th anniversary—Hamilton Hospital Corporation

Jewish community Key informants Clinicians caring for cancer patients Physicians attending conference General public and clinicians not attending conference General public and clinicians

2.3. Settings and participants There were 12 workshops for audiences of general public, health-care providers, policy makers, educators, students, and scholars. Some of the audiences were very homogeneous in their composition; others consisted of a mixture of groups (for example, healthcare providers and members of the general public) (Table 3). Settings varied from moderate-sized professional theatres, to convention centres, to university lecture theatres. Since the purpose of the research was to explore theatre as a public engagement tool, no sampling frame was required or employed. We explored various vehicles to attract participants with a view toward examining their effectiveness. We used three strategies: (i) conference programmes, posters and announcements attracted conference attendees, including health-care professionals, patient advocates, ethicists, and members of the general public; (ii) health newsletters, patient advocacy newsletters, posters and websites attracted patients, health-care professionals, students, and individuals with a particular interest in the subject matter; and (iii) posters in locations frequented by the general public (e.g. hospital lobbies and cafeterias, telephone poles, community centres) and advertisements in newspapers attracted other members of the general public. 2.4. Data collection Data collection included: (i) audiotaped and transcribed audience member comments; (ii) audience member comments forwarded to JN following the intheatre discussion orally, or in electronic or paper mail

(entered as field notes); and (iii) recording the number of participants and nature of audience composition and discussion (entered as field notes). The approximate costs associated with this initiative were also captured. At each workshop, audience members were invited to participate in a 1-h in-theatre audience discussion that followed each performance, and those wishing to comment were invited to speak into microphones provided. They were informed that their comments would be audiotaped. Audience members were invited to declare their perspective (e.g., woman living in fear of hereditary cancer, woman living with cancer, genetic counsellor, general public, family physician) but not their name. The facilitator began the discussion by asking audience members for their comments on their personal response to the play, and on their views on the ethical and policy-related issues raised by the play. The facilitator also clarified any potentially confusing or misleading comments that arose during the course of the audience discussions. 2.5. Data analysis The qualitative data were analyzed using a modified thematic analysis technique. Although not a grounded theory study, modifications of this approach were utilized, as grounded theory analysis techniques are useful for analyzing complex social processes [37,38]. First, data from the transcripts and field notes relating to a concept or idea were identified and labelled—sometimes called ‘open coding’. Concepts were considered noteworthy if many people talked about them or if they linked with specific policy issues.

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Second, similar concepts were grouped under overarching themes. In addition, the capacity of theatre as an instrument for policy development was assessed by examining the numbers of citizens engaged and diversity of audience member perspectives, the instrument’s ability to engage audience members in thoughtful and empathetic reflection regarding the central characters, and the instrument’s ability to generate informed opinions from citizens of diverse perspectives on policy issues regarding genetic testing.

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mation, sharing personal stories, emotional engagement [with story], ethics of theatre for engagement, educational vehicle (for policy developers, for those at risk of BRCA-related cancer), and resource allocation (accessibility, waiting times). Selections from the transcripts were chosen to support each theme. The three specific themes were chosen as they were able to incorporate all of the concepts derived in the earlier phase of analysis but also reflect distinct issues and concerns. Verbatim quotes from participants are included for illustration of each of the overarching themes.

2.6. Research ethics 3.1. Theatre as a public engagement tool Research ethics approval was obtained from the Research Ethics Board for the Review of Non-Medical Research Involving Human Subjects at the University of Western Ontario. Strategies for mitigating potential harms to participants included preparing a short “descriptor” of the content of the play and an “information letter”; and requesting that these be part of all invitations to potential audience members, be posted outside the theatre building and in the lobby, be read from the stage prior to the commencement of the play, and be reiterated from the stage prior to the audience discussion. The “information letter” emphasized that anyone may leave the theatre at any time, or choose to remain but not voice comments in the discussion. A 10-min break following the performance allowed audience members to leave less conspicuously. Implied choice to participate was accepted if the audience member remained in the theatre. All data were anonymized and analyzed in aggregate form, and no participants were identified. All non-public data was kept confidential.

Theatre can engage audience members emotionally. This was demonstrated through tears shed and comments such as that of a health-policy maker in Workshop 10 (WS10), who said the play “grabs me by the heart”. Audience members’ lived experience resonating with the characters may have contributed to emotional engagement, as suggested in the comment of a woman in WS11: . . . there’s a couple of definitely personal things for me in this play. Let’s hope I hope I don’t cry. I was holding it back the whole time [sniffing] . . . although I haven’t been tested yet . . . Health professionals of several disciplines appreciated the power of theatre to engage emotionally as indicated in the comments of a physician in WS7: . . . using the play was a great way to get the message across and get to you emotionally. And of a woman in WS11 who said she was “wearing my policy-maker thinker’s hat”:

3. Results In this section, we will present the data analysis, organized under the overarching themes of “Theatre as a Public Engagement Tool”, “Theatre to Elicit HealthPolicy Opinions”, and “Ethics of Using Theatre for Policy Research”. These three themes were derived from the concepts that had been identified during the initial, open coding, phase of the research. These initial concepts included: requests for information, sharing infor-

. . . using theatre as a mechanism, is to be able to capture . . . the emotion and the intimacy of the encounter . . . Theatre can also engage audience members cognitively, as indicated in the comments of two policy makers in WS10. Man: I must say my mind and my heart have been kind of racing with all sorts of ideas . . .

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Woman: . . . what the story does is, it not only does that thing from the heart, which I believe as citizens in society, care providers, members of families, is absolutely a crucial way of knowing, it’s not the only way of knowing, but it is crucial; but secondly there was a lot of a complexity being unpacked . . . we need to surface and hold these questions in tension and not leap to yes or no, black or white answers too too quickly. So I think it [theatre tool] does make it harder but perhaps better. In addition, audience members frequently contributed to the cognitive learning of others in the audience discussion. For example, a woman in WS7 educated this audience to the stress of decision-making regarding BRCA gene testing for women with breast cancer: . . . When I was diagnosed in 1997 they asked me if I wanted to find out if I had the gene. I honestly don’t think I could have handled knowing at that time. The emotional and cognitive engagement of audience members was, at least partly, a consequence of the script’s validity and verisimilitude. This was supported by the comments of a genetic counsellor in WS1: . . . I think that I really enjoyed the play because it, I think, personifies a lot of what I see in the clinic on a regular basis . . . Regarding specific policy issues imbedded in the script, such as access to BRCA gene counselling and testing, audience members’ comments validated the script. For example, from WS12: I haven’t had a blood test. I’m waiting a year from being accepted into the program, finally, to see anybody . . . How long do you have to wait to see anybody in BC [British Columbia]? The number of citizens participating in each workshop and the ‘groups’ represented are presented in Table 2. Approximately 10% of audience members did not return for the post-performance discussion. Although the opportunity to offer confidential comments, such as through email or letter, was offered at the beginning of each audience discussion, this method

was only chosen on six occasions. Several audience members, uncomfortable commenting in the audience discussion, spoke privately with researchers after the workshop, including one woman who later told JN that she felt uncomfortable speaking during the post-play discussion because her “boss” was also in the audience. As this was a research project, and one of the researchers was the script writer, and as no contracting policy development body participated, it was not possible to accurately determine the future costs of researching the script, writing the script, mounting script readings for involved communities, producing the workshops, analyzing the data, and writing the report. However, approximate costs of mounting the workshops ranged from US$ 1500 to US$ 3000 each. 3.2. Theatre to elicit health-policy opinions Five health-policy issues were surfaced by audience members, including resource allocation, patenting of genetic tests, insurance and employment discrimination, research policy, and public education. 3.2.1. Resource allocation This theme surfaced in most workshops, with audience members divided as to whether that public funding should be directed toward access to genetic counselling and testing for women at high risk of developing BRCA gene-related cancer. Most audience members who commented from the perspective of either having breast cancer or being at increased risk for breast cancer felt that public funding for rapid access to counselling and testing should occur. For example, a woman in WS8 in Toronto who described herself as “a breast cancer survivor” commented: . . . I am living daily with the consequences of knowing women who cannot get the BRCA testing in British Columbia [pause] I think we really need some serious public policy on this . . . However, one audience member who shared in WS5 that she “had breast cancer twice” did not agree with public funding: . . . people will go and spend $2000 on a tooth at the dentist, people will spend megabucks on a car, and why

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Table 2 Workshops WSa

Date

Location

No. of participantsb

Sponsor

Audience

1 2

October 2001 November 2001

Winnipeg London

100 (16) 60 (19)

Ethicists Medical educators

3

February 2003

Halifax

4

February 2003

Montreal

140 (27)

5

March 2003

Hamilton

50 (20)

6

May 2002

Ottawa

80 (25)

7

May 2002

Ottawa

120 (18)

8

May 2002

Toronto

70 (22)

9

June 2002

London

50 (12)

10

April 2003

Banff

11

September 2003

Toronto

40

12

October 2003

Ottawa

120

Canadian Bioethics Society Associated Medical Services, Council of Ontario Faculties of Medicine Narratives in Health Care, Dalhousie University Jewish General Hospital Humanity in Health Care Week McMaster University Mini-Med School The Office of Gender and Equity, and Department of Family Medicine, University of Ottawa The Office of Gender and Equity, and Department of Family Medicine, University of Ottawa University of Toronto, Joint Centre of Bioethics, and Rotman School of Management Association of Genetic Counsellors of Ontario Provincial Health Ethics Network of Alberta University of Toronto, JCB & Rotman School of Management Canadian Breast Cancer Research Alliance

a b

35 (8)

200 (20)

Multidisciplinary group of narrativists General public, Jewish community, clinicians General public, a few medical students Family physicians, general public, a few medical students General public, a few family physicians, a few medical students Genome policy developers

Geneticists and genetic counsellors Policy developers Genome policy developers Breast cancer researchers, clinicians, fund raisers, and support personnel

WS# assigned by transcriptionist, not in chronological order. Approximate number of people attending performance followed by approximate number of people speaking in discussion (in brackets).

is it that the Canadians don’t want to spend any money on their health care. Similarly, health-care professionals were divided regarding the importance of public funding for BRCA gene counselling and testing. A family physician commented in WS6 that: If the HMOs in the States have figured out that this saves them incredible amounts of money, and if we define the province of Ontario as one large HMO, why the Hell aren’t we doing this? A pediatric oncologist in WS12 was surprised that there was not universal and rapid access to BRCA gene counselling and testing, as exists for “other autosomal dominant oncogene mutations”.

Some policy makers were supportive of public funding, such as in WS10 where an “economic argument” was forwarded: . . . when we look at allocating money for, let’s say, the genetic testing . . . we can also make an economic argument that it’s incredibly expensive to die of breast cancer. However, another policy maker in WS10 expressed concern regarding allocation of public funds in this direction: . . . The worry is, with snappy, easy, genetic testing, identifying endless genes, we keep putting more money and resources into the genes and still fail to do something about the socioeconomic or environmental conditions. It’s like, you know, again health

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care and health science and technology, is kind of a Pacman . . .

and that of a family physician on the panel in WS7 commented:

3.2.2. Patenting of genetic tests This was a particular focus of audience members in WS8, including comments such as:

. . . if I have in my file that they’ve gone for genetic testing and say, for example, they are positive, I honestly don’t know what the implications will be to that person’s insurance abilities down the road.

The economics of this kind of activity are based merely on that monopoly power that the company has because it owns the patent . . . So it then boils down to what your beliefs are about incentives for companies . . . And: So it brings up the question of how much money the companies that develop it [genetic test], some of them with the help of government grants and public funding, can actually charge for something that is so lifesaving and so necessary? . . . The comment of a woman in WS12, who had investigated Myriad’s patent claim for Health Canada, illustrated the capacity of theatre and its ability to bring audience members to the position of the persons in the vortex of a policy issue: Um my job is to write national policy and I worked on this issue writing a policy position statement to try and influence or change what was happening with Myriad Genetics . . . I’m a fairly empathetic person, what I didn’t think of as I was writing it, is the power of, you know, the impact of thinking through, should I get testing . . . I wish I had had it when I did the original work but I didn’t. 3.2.3. Insurance and employment discrimination Comments suggesting policy be developed to prevent genetic-related insurance and employment discrimination were forwarded by audience members in several workshops, such as in WS6: I was involved initially in the BRCA gene study five years ago, but I pulled out . . . because of the fear I have for my daughter. I heard stories like if you have the gene your daughter won’t get insurance in the future, there will be certain things that may affect her life in the kind of occupation she chooses.

as well as several comments from members of the Ashkenazi Jewish community, which represents 90% of Jews whose ancestors came from Europe, as opposed to North Africa, and in whom the BRCA gene mutations are much more prevalent than in the general public. The most explicit of these comments was from a woman, who identified herself as a Jewish physician in SR4: the information in the play . . . will make it impossible for Ashkenazi Jewish women to get life or disability insurance . . . [the play] is doing a disservice to Jewish women . . . 3.2.4. Research policy Several audience members worried that genetic research promotes genetic reductionism, including a woman in WS6, who was concerned that genetic research would distract from: . . . the role of environment and environmental factors in breast cancer and I wonder whether the focus on genes will detract from what we are doing to the earth and planet. A woman in WS3 addressed the issue of decreased funding towards research regarding women’s health and the health of others in disempowered positions: . . . people who don’t have power might not be getting the same kind of research into issues that affect them than people who are in positions of power might have ... 3.2.5. Public education Concerns regarding the lack of public education regarding BRCA gene counselling and testing, particularly for the community at high risk of developing BRCA gene-related breast cancer, were forwarded by

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several audience members. For example, a physician administrator in WS8 commented: . . . I’m less concerned about the worry that everyone’s going to flood to the lab wanting to have tests done . . . I’m more concerned that people don’t know about it. Other audience members suggested that physicians either did not appreciate the high risk of BRCA generelated breast cancer for particular persons and families or were not aware of access to counselling, and testing, such as a woman in WS7 who asked: How come doctors don’t make their patients aware of this [BRCA gene counselling]. I’m a recent breast cancer survivor and this was never brought to my attention and I have a daughter who is 17 years old and this play is really making me take some serious thought about going for this test now and when should I tell my daughter. 3.3. Ethics of using theatre for policy research During this study we observed that theatre could potentially harm audience members, and those in relationships with them, due to their receiving new information regarding genetic risk from the play or from other audience members. Potential harms identified here include emotional distress and harm to relationships. 3.3.1. Emotional distress The potential for audience member to experience emotional distress during the performance was identified by an audience member in WS4 who identified himself as the Associate Director of a Cancer Prevention Unit: . . . all you people in the audience who are more anxious than before you came to this presentation . . . and a woman in WS4: . . . I sort of noticed a lot of the worry that it has caused sort of in the audience and a lot of the concern . . . Comments indicating the audience member was crying also suggest emotional distress occurred, such as that of a woman in WS12:

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. . . Um, I was diagnosed in ’96 and my mother in ’99, my sister in ’99 and my aunt this summer. I went through [crying] genetic counselling, twice . . . 3.3.2. Potential harm to relationships Audience members’ comments suggest that potential harm could occur to relationships with family members, health professionals, or institutions from seeing the play, or from the comments of other audience members. A woman in WS6 revealed by a woman who revealed that her mother and two aunts had premenopausal breast cancer: And one of my two daughters is sitting beside me. This is the first time, um, [pause] I’ve never said this publicly before, about having had bilateral mastectomies . . . On several other occasions, audience members indicated that their daughters may carry BRCA gene mutations. Even if these audience members had asked their daughters’ permission before commenting, there was not sufficient time for meaningful reflection. These comments may have been induced by a climate of sharing personal lived, of particular importance when theatre is employed for policy research in genetic testing, as personal sharing may reveal genetic risk of family members. Also, harm may occur to persons not present in the audience discussion, but who are identifiable through their relationships with the audience member disclosed personal information, such as emotional distress if the person learns about the disclosure, or even prejudice in employment or insurance opportunities. Potential harm to family members and friends not present in the audience, is illustrated by the comment by a woman in WS [intentional deletion], which not only illustrates potential harm to family relationships (and “friend of the family” relationships), but raises the potential for personal emotional distress due to regret of having offered the comment: I have examples of two young women who have had this surgery [prophylactic mastectomies] and they are at opposite . . . One is extremely happy that she had it. Her fear is gone. It was my sister-in-law. And as soon as her mother died she immediately was traumatized. She

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felt she was going to die. And so she, without the test, had a radical mastectomy and that was like, 12 years ago, and she is very happy. Her fear is gone. Now I have a young man, a friend of the family, whose fianc´ee has just tested positive for this gene and her fear took her to the doctor and she had the ovaries removed, the breasts removed, she had the total deal done, and now this girl’s fear is not gone. Now she is traumatized by the mutilated body. She is 30. She cannot have children, her fianc´e is devastated they cannot have children. So it’s rather interesting, two examples of whether or not this is a valid thing to do. So I just wanted to share that. This audience member has infringed on the privacy of her sister-in-law who had the preventative mastectomies, who may be identifiably by audience members who know the commentor, and thus audience members who know the commentor’s sister-in-law know a private fact that she may not choose to share. If an audience member discloses to the sister-in-law the fact the comment was delivered, relationship harm to the commentor and likely the other audience member may potentially accrue, as well as the emotional distress inherent in this breech of privacy to the sister-inlaw, and when the commentor appreciates that she has revealed identifiable information that has impinged on the privacy of her sister-in-law, she will also suffer the harm of emotional distress. The disclosure regarding the fianc´ee of the family friend may be even more problematic in that she has identified this woman as carrying a BRCA gene mutation, as well as being infertile and “traumatized by the mutilated body”, and her age, “she is 30”. Although it could be argued that no other audience members will likely know to which family friend she is referring, unless the woman may have only one sister-in-law, this is a concern that emphasized careful instruction to audience members prior to the audience discussion, beyond which occurred for this study that addresses self-identification as well as instruction to facilitators as to the necessity of their occasional intervention to caution against revealing comments.

4. Discussion In this study we investigated theatre as an innovative tool for public engagement in health-policy development. Our findings showed that theatre has the potential

to be a powerful and effective tool for engaging members of the public in regard to a health-policy issue that is scientifically and morally complex, emotionally charged, and controversial. This research project also suggested ways of maximizing the effectiveness of this strategy for public participation in health-policy development. The difficulty in evaluating tools for citizen engagement in policy development [3,5,39,40] poses difficulty for examining theatre as a tool in itself and in relation to existing tools. The attributes of a “good” public engagement strategy include “information, consultation and active participation” [41, p. 13], wide public representation [3,39,40], fairness [40], three-directional flow of information and questions (governments ask questions and citizens respond, citizens ask questions and governments respond, and citizens ask questions of and respond to each other) [5], and the assurance that the recommendations of the participants will be adopted [3,39]. Our research demonstrates theatre to be a multidirectional engagement tool (Fig. 1), as audience members received education from the script (and thus key informants and communities) and the comments of other audience members and panellists, and responded to the play and the comments of audience members with their comments and questions for panellists and other audience members, who then provided further information to which audience members could respond. The resulting opinions of audience members on specific policy issues demonstrated that the public is capable of offering informed opinions on scientific issues, thus confronting the “cognitive-deficit” [42–45] perception that public participation in policy deliberation on scientific issues is not worthwhile [3,5,6,39]. Theatre also compared favourably to existing citizen engagement strategies as assessed by the criteria proposed by Rowe and Frewer [3] (Table 3). We have identified a number of ethical issues arising from the use of theatre for health-policy research. Theatre-based policy research poses similar ethical concerns to other forms of narrative research [46–49], as participants, i.e., key informants and audience members, “are asked to share more personal and identity laden data than in traditional, nomothetic research” [47]. As it is unlikely that either key informants or audience members will benefit from policy development research, there is a further imperative to mini-

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Fig. 1. Multi-directional education through theatre prior to soliciting opinions for policy development.

mize the potential for harm. Similarly, Sinding, Gray, and collaborators, using theatre as an educational tool, expressed concern regarding how audiences of cancer patients and their families received Ladies in Waiting? [50,51]. Although personal sharing may provide data valuable to policy development, strategies must be developed to avoid harming participants. We therefore suggest that participants in theatre-based and other “open” citizen participation strategies should be considered research participants, and thus protected by the appropriate research ethics guidelines (e.g., by Canada’s Tri Council Policy Statement (TCPS) [52]) and other research codes. Persons who participate in theatre-based strategies for policy development should be afforded the same informed choice process and protections regarding their participation as persons in traditional research settings. The limitations of this research can be divided into two categories: First, some of the limitations were inherent in the design of this research. Second, some

of the limitations arose because this was a research project, and not commissioned by a policy body. In the first category, no demographic data were collected in this project and the number of participants was only estimated. Demographic information would provide a valuable supplement to the qualitative data that was the main focus of this study. The demographics form could also provide space for audience members to write some or all of their comments, thereby minimizing the problems that arise from “privileging the articulate” when audience members are uncomfortable speaking in front of a large group. Because this research project was not actually commissioned and supported by a policy body, its results reflect the views of a more limited sphere of society, i.e. participants at the conferences and educational events at which the play was performed. A more representative sample would be possible if a policy body were involved in the recruitment of participants. Further, for ethical reasons, the researchers on this project made

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Table 3 Theatre and other public participation techniquesa Technique Public hearings

Public opinion survey

Citizens’ jury

Focus groups

Theatre

Low

Generally high High

Moderate (small sample) High

High

Generally low

Moderate (small sample) High

Variable Moderate Moderate

Potentially high Indirect—difficult to determine Moderate

Potentially high Variable—not guaranteed Moderate

Potentially high Liable to be indirect Low

Low–moderate Generally high

Low Low

High Generally high

Low Variable (may be high)

Structured decision making

Low

Low

Potentially high

Low

Cost-effectiveness

Low

Potentially high

Moderate to high

Potentially high

Acceptance criteria Receptiveness of participants Independence of participants Early involvement? Influence on final policy Transparency of process to the public Process criteria Resource accessibility Task definition

a

Generally high in this research and high when anonymity can be assured Potentially high Can be high as very public Likely will be high, due to public recruitment strategies High Low in this research, but can be high if facilitator outlines specific questions to be addressed Low in this research, but can be high if in-theatre survey or touch pads used High, as the cost per citizen engaged is likely 50× less than citizens’ juries, and at least the same number of citizens surveyed by telephone can be educated prior to soliciting their comments without a dramatic increase in cost

Adapted from [3].

clear that participation in the post-play discussion was voluntary. Participants who chose not to speak in front of the large audience (whether due to discomfort with public speaking in general or to the presence of other individuals in the audience personally known to the participant) were invited to send their comments by electronic or surface mail. Few participants used this option for response; however, the involvement of a policy body would be likely to increase response rates. The opportunity to provide written comments might also minimize the potential for a social desirability bias to affect comments; participants speaking in the audience discussion might be motivated to say what they perceived the researchers and the other audience members wanted to hear. Moreover, if audience members viewed the event as an opportunity to contribute to policy devel-

opment, rather than as research or as entertainment, they may be more likely to voice their opinions. In summary, this research shows that theatre can educate and engage individuals about issues in health care and so has the potential to be a valuable tool for eliciting public participation in policy development. By educating and engaging relatively large numbers of individuals, theatre has advantages over other forms of public participation (see Table 3). Further research can determine the best ways to maximize this potential. Theatre-based citizen deliberations, when funded by a contracting policy body, will be able to engage more citizens of more diverse publics than occurred in this research and in a more representative fashion, including more general public participation and more participants from disenfranchised commu-

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nities. Strategies for recruitment in this regard and to encourage all audience members to forward their opinions include construction of homogeneous workshops (e.g., physicians, genetic counsellors, persons living with disabilities) and using wide advertisement strategies (e.g., newspapers, radio) and focused strategies (specific community centres, newsletters, and listservs). The vehicles we used to attract participants (described in Section 2) were moderately successful in that a range of different kinds of people participated. However, future engagement initiatives should use vehicles that will most effectively target the people required for the contracting body. Break-out room discussions should be conducted in a manner analogous to focus groups [53–55]. The theatre-auditorium discussion should have both a specifically trained facilitator and a recorder of field notes, who should observe all audience members throughout the performance and discussion. The inclusion of touchpad technology [56] in the theatreauditorium discussions, allowing survey-type questions (constructed both in advance and during the audience discussion) to be projected at opportune times during the audience discussion, may promote both anonymity and equal opportunity to forward opinions. 5. Conclusion Theatre can engage large numbers of citizens of diverse perspectives, emotionally and cognitively, in a fair manner that promotes their informed opinions on the policy issue under consideration. Theatre compares favourably with current methods of citizen participation. Ethical issues must be recognized when using theatre as a tool for public engagement in policy development, particularly regarding genetic testing, including potential harms to audience members and those in relationships with them. Persons who participate in theatre-based and other strategies for policy development should be afforded the same informed choice process and protections regarding their participation as persons in traditional research settings. Acknowledgements Jeff Nisker’s research is supported by the Canadian Institutes of Health Research through the Institute of

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Human Development, Child and Youth Health. Abdallah Daar’s research is supported by Genome Canada through the Ontario Genomics Institute; the Ontario Research and Development Challenge Fund; and the McLaughlin Centre for Molecular Medicine, University of Toronto. Details of matching funds can be found at www.utoronto.ca/jcb.b. This work was also partly funded by the Canadian Program on Genomics and Global Health (CPGGH). CPGGH receives most of its funding from Genome Canada and the Ontario Research and Development Challenge Fund. A full list of funders is available at www.geneticsethics.net. ASD is supported by the McLaughlin Centre for Molecular Medicine at the University of Toronto. The authors would like to thank Dr. Christine Harrison and Dr. Peter Singer for their comments. References [1] Webler T, Renn O. A brief primer on participation: philosophy and practice. In: Renn O, Webler T, Wiedemann P, editors. Fairness and competence in citizen participation: evaluating models for environmental discourse. Dordrecht: Kluwer Academic Publishers; 1995. p. 17–33. [2] Lenaghan J. Involving the public in rationing decisions. The experience of citizens’ juries. Health Policy 1999;49(1–2):45–61. [3] Rowe G, Frewer LJ. Public participation methods: a framework for evaluation. Science, Technology, & Human Values 2000;25(1):3–29. [4] Garland M. Experts and the public: a needed partnership for genetic policy. Public Understanding of Science 1999;8:241–5. [5] Coleman S, Gøtze J. Bowling together: online public engagement in policy deliberation. London: Hansard Society; 2001. [6] Nelkin D, Pollak M. Public participation in technological decisions: reality or grand illusion? Technology Review 1979;9:55–64. [7] Priest SH. Information equity, public understanding of science, and the biotechnology debate. Journal of Communication 1995;45(1):39–54. [8] Einsiedel EF. Cloning and its discontents—a Canadian perspective. Nature Biotechnology 2000;18:943–4. [9] Yearley S. What does science mean in the “public understanding of science?”. In: Dierkes M, von Grote C, editors. Between understanding and trust: the public, science and technology. London: Routledge; 2000. p. 217–36. [10] Einsiedel EF, Eastlick DL. Consensus conferences as deliberative democracy: a communications perspective. Science Communication 2000;21(4):323–43. [11] Caulfield T. Underwhelmed: hyperbole, regulatory policy, and the genetic revolution. McGill Law Journal 2000;45:437–60. [12] Nussbaum MC. Upheavals of thought: the intelligence of emotions. Cambridge: Cambridge University Press; 2001.

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