Design

The study design will be guided by the James Lind Alliance (JLA) approach, which includes the following steps: (1) forming a priority setting partnership (PSP) steering committee, (2) gathering potential research uncertainties, (3) summarizing the research uncertainties, (4) verifying unanswered uncertainties, (5) completing an interim priority setting survey, and (6) facilitating a priority setting workshop [27]. As a partnership-driven approach [29], the James Lind Alliance (JLA) is well-suited to identify relevant research priorities for both practice and science through collaboration with healthcare stakeholders, particularly patients, caregivers, and care providers. In recent years, this inclusive approach has been successfully used to set research priorities for several chronic conditions, including diabetes [30], dementia [31], Parkinson [32], chronic kidney [33], and eating disorders [34]. The study is expected to conclude in August 2026. Fig 1 illustrates all the steps of the PSP, including the scoping review that will support this process.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Fig 1. Flow chart of the PSP for patient engagement in SPC, including a scoping review.

https://doi.org/10.1371/journal.pone.0319841.g001

Research setting and participants

The study is expected to be conducted over a two-year period, from September 2, 2024 to August 31, 2026, and will involve periodontal patients and care providers in Alberta, Canada. Former and active periodontal patients, general dentists, periodontists, and dental hygienists practicing in Alberta for at least three years will be eligible to participate. Sample size estimates are not calculated for JLA-PSP projects [27]; however, based on previous similar studies [33,35,36], we estimate the enrollment of ~ 150 patients, ~ 60 general dentists, ~ 20 periodontists, and ~ 30 dental hygienists. Several recruitment strategies will be employed. Patients will be approached in person in clinical settings and contacted using clinic registries. They will also be informed about the study through local advertisements (e.g., posters), social media, and grassroots agencies. These strategies will help reach groups that have been historically marginalized and disproportionally affected by periodontal diseases. Care providers will be reached in person and through professional organizations’ communication channels (e.g., email lists, newsletters), social media (e.g., specific websites and platforms), local advertisements, and individual networks. Patients and care providers will be encouraged to invite other eligible participants.

Step 1. Forming a PSP steering committee (SC)

This committee will oversee all study activities to ensure adherence to the JLA process. Representation of all stakeholder groups will be achieved by recruiting 2 patients, 2 general dentists, 2 periodontists, and 2 dental hygienists. SC members will be offered tokens of appreciation (e.g., $25 gift card) for their participation in the meetings (n = 6) over the course of the project. Three research team members will join the SC. Meetings will take place every three months via Zoom, lasting approximately two hours. Minutes will be taken to document decisions, including any remedial actions needed to address issues related to study implementation, ensure adherence to the JLA process, and track the implementation of suggested changes in subsequent meetings.

Step 2. Gathering potential research uncertainties through survey and focus groups

An online survey using REDCap will be used to collect uncertainties, concerns, and issues that periodontal patients, general dentists, periodontists, and dental hygienists would like to be answered by research. The survey will be informed by the literature on data collection of uncertainties from stakeholders, following the JLA-PSP approach [27,28]. A total of five open-ended questions will be included, allowing respondents to elaborate on uncertainties and issues that matter to them. For example, respondents will be asked, ‘What questions and concerns would you like researchers to address regarding patient compliance with periodontal treatment?’ There will be no limit on the number of uncertainties respondents can suggest. The online survey will be available until saturation is reached, defined as the point when no substantially new uncertainties are suggested. To maximize participation, several strategies will be implemented. These include offering a $10 gift card as an incentive, clearly communicating the study’s benefits for patients, care providers, health services, and future research in the information letter, and collaborating with community agencies, clinical sites, and professional organizations. Additionally, reminder notifications will be sent to encourage participation throughout the survey period.

Five focus groups with patients and six with different care provider groups (~7 participants in each focus group) will be conducted via Zoom or in-person, depending on participant preferences, and recorded to facilitate data analysis afterwards. These focus groups will explore their perspectives on research priorities and engagement issues. Focus group participants will receive tokens of appreciation (e.g., $25 gift card) for their participation. Interview guides will be informed by previous studies and general guidelines for conducting focus groups [37]. Table 1 presents the main six focus group questions for patients. Similar follow-up questions will be asked for each main question, such as: ‘What aspects worked well or did you like?’ ‘What were the main issues or challenges, if any?’ and ‘What would you like researchers to explore about this particular topic?’ Focus group questions for care providers will vary based on their type and level of involvement in periodontal care. For example, referral providers such as general dentists and dental hygienists will be asked, ‘What has been your experience with referring patients to periodontal care?’ Table 2 outlines the main questions that will be asked to all periodontal care providers.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 1. Summary of the main focus group questions for patients.

https://doi.org/10.1371/journal.pone.0319841.t001

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 2. Summary of the main focus group questions for care provider.

https://doi.org/10.1371/journal.pone.0319841.t002

The survey and focus group interview guides for each stakeholder group will be pilot tested with similar others using standardized approaches. Data from the survey and focus groups will cover patient engagement (e.g., attendance at clinical appointment, compliance with treatment recommendations) across all critical phases of periodontal care, including referral, initial assessment, active treatment, and maintenance. Demographic information will be obtained to describe participants and ensure that vulnerable populations within the patient group are adequately represented. We anticipate ~ 600 uncertainties upon completion of this step.

Step 3. Summarizing the research uncertainties

All the uncertainties or questions obtained through the survey and focus groups will be reviewed, sorted, and turned into indicative questions by members of the research team, and will later be discussed with the SC. Reviewing suggested uncertainties will include removing duplicate and similar uncertainties, excluding unrelated uncertainties, combining related uncertainties, and turning complex uncertainties into specific uncertainties. Sorting uncertainties will include coding and grouping them into categories within main engagement issues (e.g., referral, adherence). Lastly, uncertainties will be re-worded, if necessary, into single, indicative questions to improve clarity and understanding. Although unrelated uncertainties will be excluded from this study, they will be considered for future research by the team and shared with the broader research community through a non-original article, such as a letter to the editor or a short communication paper, in a periodontology-related journal. We expect approximately 100 engagement-related uncertainties upon completion of this step.

Step 4. Verifying unanswered uncertainties

Given that the available literature on patient engagement in SPC has not been comprehensibly summarized and previous reviews have served different purposes, the research team will conduct a scoping review to map the breadth and depth of the research activity on this topic. This review will be used to verify whether the identified uncertainties have been answered and will include a quality assessment of the included studies. While this assessment is optional in scoping review studies, it will be necessary to assess whether the available evidence is credible enough to answer the suggested uncertainties. The quality assessment will be performed using design-specific critical appraisal tools (e.g., for cohort studies) and grading systems [38]. The scoping review will be initiated in step 1 to enable the utilization of the review findings in this step. Arksey & O’Malley’s multi-step framework will guide the scoping review [39], which will be reported according to the PRISMA Extension for Scoping Reviews guidelines [40]. Specifically, this review will characterize the types, sources, quality, and coverage of the available evidence to establish the existing knowledge and gaps in the literature. The assessment of the existing knowledge will be complemented by consulting previous reviews, position statements, and clinical guidelines related to patient engagement in periodontal services, including the referral process. Uncertainties already answered will be excluded, while unanswered or partially answered questions will be considered in the next step. We expect 60 to 70 unanswered or partially answered uncertainties upon completion of this step.

Step 5. Completing an interim priority setting survey

Respondents of the survey who provided contact information will be invited to complete a second REDCap survey, which will include the remaining uncertainties from Step 4. They will be asked to rank their top ten uncertainties based on perceived relevance for patient engagement in SPC. Uncertainties included in this survey will be organized by engagement issue and randomly order within each issue. This survey will remain available for two months based on times allocated for completion in previous studies [41,42]. Responses from each participant will be recorded as follows: an uncertainty ranked 1 will be given 10 points, an uncertainty ranked 2 will be given 9 points, and so on down to an uncertainty ranked 10, which will be given 1 point. Total points per research uncertainty will be calculated to rank them from highest to lowest across engagement issues. We anticipate approximately thirty uncertainties upon completion of this step.

Step 6. Facilitating a priority setting workshop

All participants involved in steps 2 and 5 will be invited to participate in an in-person workshop to discuss, refine, and rank the top ten research uncertainties from the priority list generated in the previous step. Potential participants will be informed about the workshop’s purpose, benefits, risks, and their role, as well as the roles of other participants, such as the facilitator and members of the SC. Approximately 20 participants representing all the stakeholder groups are expected to be involved. We do not anticipate excluding any individuals who wish to participate at this stage, as our resources allow us to accommodate additional participants if necessary. Members of the SC will observe the workshop, which is expected to last approximately 2 hours. The workshop will be conducted by a facilitator trained in using the nominal group technique to build consensus [43], and will take place at the School of Dentistry at the University of Alberta. Workshop participants will receive tokens of appreciation (e.g., $25 gift card) for their involvement. The SC will review the top ten research priorities to further improve their wording in order to ensure understanding and facilitate dissemination.

Data management and analysis

Survey data will be managed using REDCap and exported to Excel for descriptive statistical analysis. Zoom recordings will be automatically transcribed, while professional transcription services will be employed for the in-person focus group recordings. All transcriptions will be reviewed for accuracy before proceeding with data analysis. Inductive, manifest content analysis will be used to analyze qualitative data from the open-ended survey questions and focus groups [44]. These data will be coded by segment of meaning, grouped into potential categories, and checked to assess whether potential categories actually account for the data included within each and the entire data set. Revised categories will then be refined, structured, and re-labeled, if necessary. Representative quotes will be used to support the analysis. Two research team members with formal training in qualitative research will lead the data analysis. The results of their analysis (e.g., developed categories and sub-categories) will be reviewed and discussed with the rest of the research team and presented to the steering committee for further input and discussion. Both quantitative and qualitative data will be kept anonymous and confidential. Quantitative data will be aggregated (e.g., only group-level data will be reported) and qualitative data will be pseudonymized to ensure confidentiality.

Ethics

Ethics approval for the study was granted from the Human Research Ethics Board of the University of Alberta (Pro00138190). All eligible participants will be informed about the study, including its objective, potential risks and benefits, steps, the nature of their involvement, and their rights, such as the option to withdraw from the study at any time. Implied consent will be obtained from survey respondents, while written consent will be required from focus groups and priority-setting workshop participants prior to data collection. For eligible patients invited to participate in the study in clinical settings, consent to be contacted will be sought. Clinical data will be used exclusively to identify eligible participants, and identifiers will not be collected. Only members of the research team and the steering committee will have access to the aggregated data. Focus group participants will be reminded to keep shared views confidential, though complete confidentiality cannot be guaranteed in focus groups. A trained facilitator will ensure that all focus group participants have an equal opportunity to share their views and concerns. The demographic and salient characteristics of all stakeholder groups will be monitored to ensure representativeness, especially among vulnerable individuals within the patient group.

Dissemination

The dissemination plan aims to raise awareness among various target audiences about research priorities for engagement in SPC that reflect the interests of both patients and care providers. These audiences will include patient representatives and advocacy groups, local grassroots and professional organizations, funders, and researchers. The top ten research priorities will be integrated into infographics and disseminated via email to all survey, focus group, and workshop participants, members of the steering committee, and target patient representatives and advocacy groups. Meetings with advocacy groups will be held to explore actionable strategies intended to influence public and private funders’ priorities regarding periodontal research, particularly the engagement of vulnerable groups in periodontal services. Social media will also be used to communicate the identified research priorities to the public.

A brief report summarizing the study findings will be shared with partnering grassroots agencies, professional organizations (e.g., Alberta Academy of Periodontists), and dental academic and non-academic clinics that supported the recruitment of study participants. These partners will also play a pivotal role in designing and implementing future research projects to address the identified research priorities. The brief report will also be shared with local and nationwide funding agencies supporting health research in Canada (e.g., Canadian Institutes of Health Research). Meetings and presentations will be held with target funders to disseminate the identified research priorities and explore ways of integrating these priorities into their financial support for oral health service research. The study results will be presented at both national (e.g., Canadian Academy of Periodontology annual meeting) and international (e.g., American Academy of Periodontology annual meeting) conferences. They will also be published in high-impact, peer-reviewed journals in the fields of periodontology (e.g., Journal of Periodontology) and dentistry in general (e.g., Journal of Dental Research) to reach academic and professional audiences.

Evaluation criteria for the dissemination plan will include the number and outputs of meetings held with advocacy groups, grassroots and professional organizations, and funders; the number of collaborations and partnerships formed with these partners; the uptake of the research priorities by relevant academic institutions and funding bodies; and the number of abstracts, oral presentations, and publications derived from the study.

Study strengths

Several strengths can be attributed to the study design. First, the study design follows a well-established approach that offers transparency and replicability for setting research priorities in partnership, where the uncertainties suggested by all the stakeholders are equally considered [27]. Second, qualitative and quantitative data will be used to identify and prioritize unanswered uncertainties regarding patient engagement in SPC. The qualitative data will also help describe pressing issues and concerns for patients and care providers regarding the study topic. Third, unlike many previous studies that either were not informed by literature reviews or lacked details on how the literature was searched [52], in our study, a comprehensive scoping review, including a quality assessment of the selected studies, will be conducted to verify whether the suggested uncertainties had already been addressed. While quality assessment is not required in scoping review studies, it appears to be necessary for judging whether the existing evidence is sufficient and credible to answer the suggested uncertainties. Fourth, three groups of periodontal care providers (general dentists, periodontists, and dental hygienists) will be involved to ensure the representation of care providers delivering this care. Additionally, actions will be taken to monitor and ensure the representativeness of patients, especially those from traditionally underserved populations and groups (e.g., senior, low-income individuals). Lastly, strong partnerships were developed with professional organizations, academic and non-academic dental clinics, and patient representatives to enhance the recruitment of participants and facilitate knowledge dissemination upon completion of the study.

Study limitations

Our study also has some limitations that need to be acknowledged. First, it will involve only patients and care providers from the province of Alberta, Canada. Therefore, the generalizability of the study findings will depend on the similarities between the study context and implementation contexts, including target populations. It is important to keep in mind that involving participants from different contexts and jurisdictions is not without consequences, as issues related to patient engagement in health services tend to be context-specific [42]. Second, the recruitment of participants may be subject to selection bias, as those who choose to participate, whether by completing a survey, attending a focus group, or participating in the prioritization workshop, may not fully represent the stakeholder groups involved in the study. Research suggests that the involvement of patients and caregivers from vulnerable groups (e.g., ethnic minorities) in setting research priorities may be challenging [53]. To minimize this bias, several recruitment strategies will be employed, and the demographic and other salient characteristics (e.g., clinical experience) of participants will be monitored to ensure the representativeness of all stakeholder groups. Third, the use of online surveys to collect uncertainties may introduce information bias, as it likely favors individuals who have access to and are familiar with the Internet [54]. To address this bias, alternative methods for survey participation will be considered, such as paper-based surveys, telephone interviews, or in-person interviews. Lastly, the level of participation and the number of suggested uncertainties may vary across stakeholder groups, depending on their familiarity with research, the breadth and depth of their experiences related to patient engagement in SPC, and their ability to identify and articulate uncertainties that can be addressed through research. This issue will be addressed by employing various methods (e.g., focus groups, individual interviews, surveys) to accommodate their preferences and communication styles.

Future research

An important future direction is to facilitate the uptake of the identified research priorities by both researchers and funders, a challenge that has been consistently observed in studies involving partnership-based priority setting [30]. The involvement of patients and care providers in setting research priorities is an important step; however, it does not automatically ensure that the identified priorities will be addressed through research or that they will ultimately improve clinical practice. It has been observed that priority-setting exercises often lack rigorous evaluation of their utility, while some evidence suggests there are still mismatches between the research priorities identified by stakeholders, the research agendas being pursued, and the resource allocations by public and private funding bodies after these exercises [42,45,55]. Several strategies have been suggested to improve the uptake of identified research priorities in partnership [27,55], some of which are summarized in Table 3. The findings of the present study will be purposefully and strategically disseminated to oral health researchers and funders to enhance the uptake of the resulting research priorities and will inform the research agenda of our research team, specifically the ongoing research program on patient engagement in SPS in both academic and non-academic dental institutions in Canada.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 3. Strategies to improve the uptake of uncertainties by researchers and funding bodies.

https://doi.org/10.1371/journal.pone.0319841.t003