Background
Wait times have been ranked as a significant failing of public health systems in opinion surveys across several industrialized countries [
1]. Waiting for care can lead to patient suffering, strained doctor-patient relationships and significant patient dissatisfaction [
2]. However, there is no agreement on how to set wait time targets and prioritize wait lists.
Wait time management has been studied in many contexts, such as radiation oncology,[
3] critical care,[
4] intensive care,[
5] limb arthroplasty,[
6] emergency department,[
7] and surgery[
8]. Many countries have tried to reduce wait times through formal wait time reduction strategies [
9,
10]. Despite the vast array of wait time management efforts, the public (please see Table
1 for Definitions of Key Terms) have been involved in only a few [
11].
Table 1
Definitions of Key Terms
Public engagement: The practice of involving members of the public in the agenda-setting, decision-making and policy-forming activities of a wait time management initiative. |
Public: Citizens other than those affiliated with government and health care providers, employees of pharmaceutical and device companies, employees of disease-focused groups and elected officials. |
For example, in June 2004, the National Health Service in the UK announced a wait time reduction effort, the "18 week patient pathway", which guarantees that no citizen would wait more than 18 weeks for surgery by 2008 [
10]. The NHS's Patient and Public Champion Lead is responsible for ensuring the public experience is at the heart of the pathway's work, but they have not included lay representatives on decision making bodies to facilitate shared decision making [
10]. A wait time reduction effort in New Zealand set priority criteria to reduce wait times in five areas of the health system and public forums were held to discuss the role of social factors in wait list prioritization [
9]. However, the public were not consulted in the initial development of the criteria, nor were the public involved in any advisory committees developing priority setting criteria. These examples demonstrate that, even in contexts where the public have in some way been consulted, they have not been effectively involved in wait time management.
Many wait time initiatives have promoted their website as a vehicle for public involvement, and these websites have disseminated a wide range of information to the public [
12,
13]. For example, The New South Wales Health Department (Australia) wait time website allowed patients and physicians to search wait times for various procedures [
14]. New Zealand's website for elective surgery provides information to the public about the booking system and clinical priority guidelines [
15]. The UK's 18 Week Pathway website provided information on the strategy's goals and actions, and data on current wait times [
10]. Cromwell
et al. reviewed the websites of 6 government wait time initiatives and found that the wait time statistics were highly questionable because of the different types of data and aggregations employed; none of the websites stated whether the wait time statistics could be used to predict an expected waiting time; and most sites provided inadequate advice on how to appropriately interpret the information on the website [
16].
Increasing Public Involvement in Wait Time Initiatives
Scholars and governmental reports have advocated for increased public involvement in wait time management, and increased communication to provide information about the priority setting process and rationales to the public [
17,
18]. They argue that the fairness of wait time initiatives can be improved by involving all stakeholders and considering all relevant values - including the public [
18]. The public wants to be consulted and educated about wait time management decision making [
19]. They also want more transparent priority setting and more information about the priority scores used for waiting time management [
20]. Such information may allow them to more readily accept waiting for care, and better equip them to deal with wait times [
7,
8].
Canada's Federal Advisor on Wait Times proposed that the government should disseminate information about actions provinces are taking to reduce wait times and why they are taking such actions, and that the public should be involved in the development of the education efforts to determine how to frame and disseminate the message to effectively reach Canadians [
17].
The Ontario Wait Time Strategy
The Ontario Wait Time Strategy (OWTS) (Canada) is a province-wide initiative to improve access and reduce wait times in five areas [
21]. Previously we conducted a qualitative case study to describe and evaluate the priority setting activities of the OWTS, with particular attention to public engagement [
22]. This previous study was guided by an explicit conceptual framework - 'accountability for reasonableness' [
23] is a conceptual framework for legitimate and fair priority setting. It has gained international recognition and emerged as the leading conceptual framework for priority setting researchers [
24]. To describe the priority setting process of the OWTS we used qualitative case study methods. There were two sources of data: (1) over 25 documents (e.g. strategic planning reports), and (2) 28 one-on-one interviews with informants (e.g. OWTS participants). Data was analyzed using a modified thematic technique in three phases: open coding, axial coding, and evaluation. Evaluation involved comparison between the description of the case study (i.e. what they did) with the conceptual framework, (i.e. what they should do). Points of agreement with the framework were considered good practice; points of divergence were marked as areas for improvement. The OWTS partially met the four conditions of 'accountability for reasonableness'. Study participants identified both benefits (i.e. experts of the lived experience) and concerns (i.e. public's lack of interest to be involved) for public involvement in the OWTS [
22].
Additionally, in the previous study we found that there was no public involvement in the decisions of the OWTS, and that their website was the sole vehicle for public engagement. We found that the OWTS provided an email address on its website for the public to submit comments and questions, but the emails received by the OWTS were unanalyzed.
To our knowledge, no studies have described the views of members of the public about a specific wait time initiative. To fill this gap we conducted two qualitative studies: 1) an analysis of all emails sent by the public to the OWTS email address; and 2) in-depth interviews regarding the priority setting activities of the OWTS with members of the Ontario public. We provide empirically derived recommendations for public engagement in a wait time management initiative.
Discussion
Findings suggest the public want increased communication from and with the OWTS. Effective communication with the public can facilitate successful public engagement, and in turn fair and legitimate priority setting. To our knowledge, this is the first study that has described the views of members of the public about a wait time management initiative, with a specific focus on public engagement. These findings will be helpful to the leadership of the OWTS and could be helpful to leaders of wait time initiatives elsewhere.
We found that members of the public wanted to be more informed about the OWTS and its actions, and wanted the public to participate in the priority setting of the OWTS. Previous research has similarly reported that the public want to be better informed of the actions of wait time management initiatives and desired to participate in decision making [
19,
20].
The key findings from our study concerned the provision of information by the OWTS. Although the OWTS's website was intended to disseminate information to the public, our participants were not satisfied with the information provided by the OWTS -- they wanted more information. Moreover, the members of the public in our study believed that some of the information that was provided by the OWTS -- on its website and through the media -- was inaccurate, misleading and even dishonest. Patients in other wait time studies have suggested receiving accurate information on wait times and reasons for waiting will help them to better deal with waiting for care [
7,
8].
Most participants of the interview study were not aware of the OWTS' efforts to disseminate information about the strategy through their website, media briefings, and television advertisements, which raises questions both about the effectiveness of these communication strategies and the public's willingness to spend time informing themselves about the OWTS. Some email correspondents who were aware of these efforts were angered by the OWTS television advertisements and suggested the advertisements were a waste of money. The OWTS needs to reconcile this dichotomy - that some members of the public want more communication, while others were angered by certain communication efforts, particularly the television advertisement.
The OWTS website clearly stated that the OWTS's definition of wait time was the time from the decision that surgery was indicated to the time of surgery, and did not claim to incorporate the time waited to see a general practitioner and a specialist. However, many participants in our study distrusted the OWTS website because this definition did not correspond with their experience of waiting for care, which includes time waiting to see a primary care physician and the time waiting to see a specialist. Consequently, participants believed the wait time statistics were conceptually flawed and biased toward being short, and this increased their skepticism about the entire OWTS. This level of skepticism might have been decreased if the OWTS website explicitly acknowledged that the strategy was at present only focusing on one aspect of the wait times experienced by patients, and that the other wait times (e.g. waiting to see a family physician, waiting to see a surgeon) are extremely important as well.
Some study participants distrusted the OWTS because their own wait times were longer than the wait times reported on the website. This suggests that the some members of the public do not know how to interpret wait time statistics, which invariably represent a summary of wait times (e.g an average wait time, or the maximum length of time waited by 90% of patients). It seems unfair to blame the OWTS for this, but it does suggest that more effort needs to be spent explaining how to interpret the figures presented on the website, and to explicitly indicate that some patients will wait longer than the numbers suggest.
Based on the findings from this study, our previous study of the OWTS [
22], current public involvement literature, and the 'accountability for reasonableness' framework we suggest concrete ways for improving public engagement in wait time management in Table
2: Recommendations for Public Engagement in the Ontario Wait Time Strategy. The recommendations include:
1) Shared Decision-Making - collaboration between the public and 'experts' will enhance legitimacy and fairness at all stages of OWTS decision making. Both participants from this and the previous study supported public involvement in decision making, and suggested the public participate as shared decision-makers. Participants suggested creating public positions on the expert panels as a way to facilitate public participation. Additionally participants of the previous study and of the interviews suggested creating a public committee as a vehicle to facilitate ongoing public consultation (i.e. a citizens' council). 2)
Communication Strategy - enhanced communication will facilitate effective public engagement, and in turn fair and legitimate priority setting. Both email correspondents and interview participants wanted more communication with and information from the OWTS. Findings from our previous study identified poor communication with the public about the OWTS an area in need of improvement. 3)
Feedback and Appeals Mechanism - a formal mechanism, with channels to decision makers, to permit public feedback on priority setting activities will enhance the responsiveness of the strategy and the legitimacy and fairness of priority setting. The previous study of the OWTS found that there was no formal feedback and appeals mechanism for stakeholders on OWTS priority setting. Additionally, the email correspondents tried to use the OWTS email address as an informal feedback and appeals mechanism, but were unsuccessful.
Table 2
Recommendations for Public Engagement in the Ontario Wait Time Strategy
Shared Decision Making
| 1) Create positions for public members on expert panels. |
| create two public positions on each expert panel to help mitigate the potential power differences between 'experts' and the public |
| provide training workshops to educate the members about the initiative, and on their roles and responsibilities for participating on the panel |
| 2) Construct a Citizens' Council, consisting of the assembled public from the expert panels, to collaborate with the OWTS and provide ongoing advice on priority setting. |
| engage the public in developing a definition of wait times that corresponds to patients' lived experience, identifying criteria that will serve as a guide to priority setting in general, and the selection of future target service areas |
| advice of the Citizens' Council can be incorporated with that of other stakeholders |
Communication Strategy
| 1) Create a communication panel, including expert and public members, to develop an effective communication strategy aimed at all stakeholders, especially the public. |
| disseminate the actions of the strategy, and the rationales (how? and why?) used |
| public members can advise the communication on what information about the strategy the public would like disseminated, and effective vehicles for message-framing |
| efforts should be made to better design the website so that the public is not disenfranchised by misinterpreting information on the website |
Feedback & Appeals Mechanism
| 1) Establish a formal feedback/appeals mechanism for all stakeholders, including the public. |
| create a feedback section on the OWTS website - provide established questions about OWTS priority setting (e.g. What areas of care would you like the OWTS to include if its' priority areas are expanded?) |
| conduct a series of randomly distributed mail out questionnaires to the public to obtain their views on the priority setting |
| 2) Synthesize and analyze the feedback |
| both the OWTS leaders and the citizens' council should periodically provide a public report on the feedback providing: a summary of the feedback, and the corresponding action(s) taken to address the key issues identified from the feedback |
Implementing an extensive public engagement strategy at the OWTS raises some important questions: Do all wait list initiatives need an extensive public engagement strategy? Should similar public engagement strategies be instituted in other contexts of the health system (i.e. nursing homes, hospitals)? Do we need Citizens' Councils for all areas of health care? There are insufficient resources to implement expansive public engagement strategies in all contexts of the health system and in every wait list management initiative. Public engagement efforts should be proportional to the importance of the initiative. Wait times initiatives are important -- according to public opinion surveys across several industrialized countries wait times are considered a significant failing of public health systems [
1]. Even if extensive public engagement throughout an entire health system is not practical, decision makers should strive to implement some degree of public engagement - public engagement is not an all-or-none phenomenon. Further, the public can be involved in many ways ranging from didactic communication efforts to shared- decision making. Effective public engagement enhances the legitimacy and fairness of decision making, which is a key overarching goal of public policy making.
Is there not some responsibility of the public to be proactive in putting their views forward? The public have some responsibility in utilizing avenues available to them to voice their views, such as an email address set up for their feedback. However, this avenue may prove unfruitful if no one reviews, or responds to, their emails. Where no public engagement vehicles are provided, citizens often resort to public demonstrations that capture media attention, which may be embarrassing for a government but is usually less effective at stimulating policy change. An effective public engagement strategy sends a message to the public that their views are important. This in turn may increase public support of the initiative and trust in the decision makers.
Limitations
The primary limitation of this study is that the findings may not be generalizable to all members of the public or to other wait list strategies. Each study group provided a limited perspective, in particular the emails correspondents. The email correspondents were likely more disgruntled than the average citizen and thus may not represent the views of Ontario citizens. It is also likely that seniors and individuals of a low socio-economic status are not as likely as the average Ontarian to be represented by the email correspondents' views. No socio-demographic information was collected on the email correspondents or on the average user of the OWTS website. However, the email correspondents' responses provide a relevant perspective. The views described from the interview study were limited to one stakeholder group: Ontarians living in Toronto who were visiting their general practitioner. However, generalizability was not a goal of this study. Each study provided a rich description and a valuable contribution to the knowledge base. It is likely that lessons from the studies will be helpful to others in wait list management and other priority setting contexts. Input from other groups of stakeholders would provide an ever richer description and is a potential for future research. Moreover, the methods can be duplicated with great benefits in other contexts. Second, this study is time limited, and the OWTS is an ongoing and dynamic initiative, which is continuing to learn and revise its strategy. However, the majority of key priority setting decisions pertaining to the OWTS have been made prior to and during this study period. The third limitation is social desirability bias -- interviewees' views may reflect what they thought the researchers wanted to hear. However, the parallel analysis of emails provides verification for the interview data.
Competing interests
The authors declare they have no competing interests.
Authors' contributions
RB conducted the data collection (interviews and email analysis) on which this paper is based, collated and analyzed the data, and drafted the manuscript. DKM participated in analyzing the data and commented on earlier drafts of the manuscript and was involved in revising it critically for important intellectual content. AL commented on earlier drafts of the paper. WL commented on earlier drafts of the paper. All authors made substantial contributions to the conception and design of the study and read and approved the final manuscript.