Four public deliberations were organized by McMaster University to study public knowledge, awareness, and perceptions of mammography screening.
Problems and Purpose
Recent epidemiological studies have shown that the benefits of mammography screening, including mortality reduction, may not be as large as once hoped and come with a number of risks including overdiagnosis and false positives. [1,2] This emerging evidence has led to incremental changes in screening guidelines, including raising the age when mammography screening begins, increasing the time between screens, and placing greater emphasis on the importance of women making informed choices about screening that fit with their values and preferences. [3]
Emerging evidence on the net benefits of mammography screening provided the catalyst for this series of citizen deliberations. The purpose of this initiative was to (1) elicit citizen values about breast cancer screening; and, (2) explore policy options to support citizens in making an informed choice regarding mammography.
Background History and Context
Researchers in countries such as Australia, Switzerland, and the UK have conducted studies to gain insights into citizens' perspectives on mammography screening, but little work had been done in Canada. The study context was the province of Ontario, where average risk women aged 50 - 74 are offered screening mammograms every two years through the Ontario Breast Screening Program (OBSP).[4] Researchers held a series of four citizen deliberations about how to best support informed decision making in this area.
The use of citizen deliberations to understand the values, opinions and policy recommendations of the Canadian public is not new. Numerous studies have been published on the use of citizen panels and public deliberations to elicit public opinion to better inform healthcare policy, especially within the context of health technology and health care systems in Canada.
Organizing, Supporting, and Funding Entities
This initiative was started by a group of researchers at McMaster University, with diverse backgrounds in public participation, citizen deliberation, and health policy (Julia Abelson), health research methods (Melissa Brouwers) and, oncology (Jonathan Sussman). The McMaster Health Forum assisted by hosting a public lecture on this topic. The project was funded by the Government of Ontario through a Ministry of Health and Long-Term Care Health System Research Fund grant entitled "Harnessing Evidence and Values for Health System Excellence" and the Ontario SPOR Support Unit (OSSU) which is funded by the Canadian Institutes of Health Research (CIHR) and the Government of Ontario. The funders did not play a role in the research process. The views expressed in this entry are the views of the authors and should not be taken to represent the views of the funders.
Participant Recruitment and Selection
Forty-nine participants were recruited for the study. A number of recruitment strategies were used including: (1) members of a previous citizen panel led by Abelson were contacted and asked to participate in the current study; (2) posts on Canada's most popular ad service website "Kijiji" and in local newspapers; (3) members of the "AskingCanadians" online panel were recruited in two ways - through direct recruitment into the project (e.g., a survey eliciting their interest in participating in the study) and, through a larger population survey on the topic which included a question at the end for those eligible to determine interest in participating in the deliberation. The first deliberation included men and women 18 years of age and older from across Ontario (1 participant was recruited from each of Ontario's Local Health Integration Networks (LHINs)). The subsequent panels included screen-eligible women (women aged 50 - 74 years, who had no personal history of breast cancer). Participants were provided a small stipend ($75) as well as reimbursement for accommodation, travel and parking fees as applicable for the duration of the deliberation.
Methods and Tools Used
An in-person, face-to-face deliberation method was used. This event used the Citizens' Reference Panel methodology which is similar to a Citizens' Jury in its use of various tools of engagement including surveys, information, question and answer periods, large group deliberation, and small group deliberation (such as thematic dialogue tables or future workshops), audience response systems, and a final convergence session that debriefs the topics of the day.
What Went On: Process, Interaction, and Participation
A total of four citizen deliberations were conducted between March 2015 - April 2016. Three panels lasted 1.5 days, and one panel lasted 0.5 days. Panel A consisted of a Pan-Ontario demographic, including men and women older than 18 years. The remaining panels were held in three jurisdictions across Ontario with women who were eligible for screening (e.g., aged 50 - 74 years, no personal history of breast cancer). Panel locations were selected to allow for variations in geographic locations (urban, rural, northern) and mammography screening rates (high, average, low screening rates).
To ensure that participants had a clear understanding of the emerging evidence on mammography screening prior to beginning the deliberation, a number of strategies were used to share information and evidence including:
- Reading materials and discussion questions sent to participants by mail prior to the deliberative event;
- Public lecture by a Family Physician and a Radiation Oncologist to share the emerging evidence on mammography and reflect on the impact that this has on their clinical practice (viewed live (in-person or through online streaming) by the first panel members, and recorded for future panel members);
- A question and answer session with at least one of the physicians who spoke at the public lecture; and,
- Additional information shared during the deliberative sessions through lectures and videos from other experts.
The participants were asked to deliberate on four main questions:
- What citizen and patient values should be reflected in mammography screening programs?
- What principals should guide the development of materials to support informed decision making about mammography screening?
- What should be included in government-sponsored materials about mammography screening?
- How should information about the risks and benefits of mammography screening be presented?
Influence, Outcomes, and Effects
Participants were able to meaningfully deliberate on the questions that were posed and reported high levels of satisfaction with the deliberative process. Some aspects of the deliberations generated emotional responses, confusion and a sense of unease amongst the participants.
Analysis and Lessons Learned
This project has provided insights into the public's values on breast cancer screening, such as the values and principles that are perceived to be important, namely, the ability to choose whether to do mammography or not (choice), the responsibility of the government to provide up-to-date information on breast cancer screening (information), the need for transparency on screening processes and evidence (transparency), and accountability on both the public, physicians, and the government on making mammography screening and its evidence known (accountability).
Overall, the Pan-Ontario panelists value choice, information, transparency, and accountability in a breast cancer screening program, guidelines and materials that can support informed decision-making are appreciated.
See Also
References
[1] Marmot MG, Altman DA, Dewar SG, Thompson M, Wilcox M, & The Independent UK Panel on Breast Cancer Screening. (2013). The benefits and harms of breast cancer screening: an independent review. British Journal of Cancer, 108, pp. 2205-2240. DOI: 10.1038/bjc.2013.177
[2] Miller AB, Wall C, Baines CJ, Sun P, To T & Narod SA. (2014). Twenty five year follow-up for breast cancer incidence and mortality of the Canadian National Breast Screening Study: Randomised screened trial. BMJ, 348, g366. DOI: 10.1136/bmj.g366
[3] Klarenbach S, Sims-Jones N, Lewin G, Singh H, Theriault G, Tonelli M, et al. (2018). Recommendations on screening for breast cancer in women aged 40-74 years who are not at increased risk for breast cancer. CMAJ, 190(49): E1441-E1451. DOI: 10.1503/cmaj.180463
[4] Cancer Care Ontario. (n.d.). The Ontario Breast Screening Program. Retrieved from: https://www.cancercareontario.ca/en/cancer-care-ontario/programs/screening-programs/ontario-breast-obsp
External Links
Abelson J, Tripp L, and Sussman J. “I just want to be able to make a choice”: Results from citizen deliberations about mammography screening in Ontario, Canada. Health Policy, Vol 122 (12), Dec 2018 (1364-71). https://doi.org/10.1016/j.healthpol.2018.09.013
Tripp L, Abelson J. Supporting women at average risk to make informed decisions about mammography when there is no ‘right’ answer: a qualitative citizen deliberation study. CMAJ Open, 2019; 7(4):E730-E737. http://cmajopen.ca/content/7/4/E730.full
Journal Article "Uncertain times: A survey of Canadian women's perspectives toward mammography screening" https://www.sciencedirect.com/science/article/pii/S0091743518301324
