A Protocol for Identifying Priorities for Women+ Health in the Maritime Provinces using a Priority Setting Partnership Approach

This study employs a modified Priority Setting Partnership approach to collaboratively identify and prioritize the top ten unanswered research questions regarding women+ health in Canada's Maritime provinces through a mixed-methods process involving diverse stakeholders.

The Gist

Imagine the healthcare system in the Maritime provinces (Nova Scotia, New Brunswick, and Prince Edward Island) as a massive, complex kitchen. Right now, the chefs (doctors and researchers) are cooking up recipes to keep people healthy, but they often feel like they are guessing the ingredients. They might be missing key spices, or they might be cooking the same dish over and over while ignoring a hungry crowd waiting for something new.

This paper is a recipe for a new cooking competition designed to fix that.

Here is the simple breakdown of what the authors are planning to do:

1. The Problem: Cooking in the Dark

The authors point out that for a long time, health research has been like a kitchen where the chefs only cook for a specific group of people, often ignoring the unique needs of women and people assigned female at birth (they use the term "women+" to include cisgender women, transgender men, non-binary folks, and Two-Spirit people).

• The Gap: Only a tiny slice of the research funding pie (about 7%) goes to women's health.
• The Result: People get misdiagnosed, treatments don't work as well for them, and they wait longer to see a doctor. In the Maritimes, many people don't even have a regular family doctor to start with.

2. The Solution: A "Community Taste-Test"

Instead of the chefs deciding what to cook next, this study wants to ask the diners (the patients and the public) what they are hungry for. They are using a method called a Priority Setting Partnership (PSP). Think of this as a massive, region-wide "Taste-Test" to figure out the most important questions that need answers.

3. The Five-Step Menu

The study is broken down into five clear steps, like a cooking show:

• Step 1: The Head Chefs (Steering Committee)
  A small group of experts, patients, and community leaders forms a "Head Chef" team to make sure the process is fair and organized. They are the ones holding the clipboard.

• Step 2: The Open Mic (Gathering Questions)
  They will launch a bilingual (English and French) online survey open to everyone in the three Maritime provinces.

  • The Analogy: Imagine a giant "Suggestion Box" where anyone can drop in a note saying, "I wish we knew how to fix X," or "Why does Y hurt so much?"
  • They want to hear from everyone: the person living with an illness, their family, doctors, nurses, and policymakers.

• Step 3: The Kitchen Clean-Up (Verifying Questions)
  Once they have thousands of notes, the team will sort through them.

  • They will throw away duplicates (like two people asking the same thing).
  • They will check the "Pantry" (existing scientific research) to see if someone has already solved the problem. If the answer is already known, they won't waste time asking it again.
  • They will group similar questions together, like putting all the "soup" questions in one bowl and all the "dessert" questions in another.

• Step 4: The First Vote (Interim Ranking)
  They will send out a second survey with the "cleaned" list of questions.

  • The Analogy: This is like asking the diners to vote on their top 20 favorite dishes from the menu. People will rate how important each question is to them. This narrows the list down to the "Top 20" most urgent topics.

• Step 5: The Grand Tasting (The Final Workshop)
  About 30 people (a mix of patients, doctors, and researchers) will meet for one day—some in person, some online.

  • They will sit around a table and debate the "Top 20" questions.
  • Using fun, interactive tools (like dot-voting and mapping), they will work together to agree on the Top 10 most critical research questions for the region.

4. The Final Dish: A Shared Menu

The goal isn't just to write a boring report for scientists. The goal is to create a shared menu that everyone agrees on.

• Why it matters: Once they have this "Top 10" list, they can hand it to the people who hold the money (funders) and the people who make the rules (policymakers).
• The Promise: It tells them, "Don't just guess what to research next. Here is exactly what the community says they need. Cook these dishes first."

In a Nutshell

This paper is a blueprint for a conversation. It's about stopping the guessing game in healthcare and starting a real dialogue where the people who actually live with the health issues get to decide what questions scientists should answer next. It's about making sure the kitchen in the Maritimes cooks meals that actually feed the people sitting at the table.

Technical Summary

1. Problem Statement

Despite the existence of regionally coordinated health systems in the Canadian Maritime provinces (Nova Scotia, New Brunswick, and Prince Edward Island), individuals identified as Women+ (a gender-inclusive term encompassing cisgender women, transgender men, non-binary, Two-Spirit, and gender-diverse individuals with sex-based biological characteristics) face disproportionate health risks and persistent gaps in care.

• Health Disparities: Women+ in the region experience higher incidences of breast and lung cancers and higher rates of unmet healthcare needs compared to the general population.
• Research Gaps: Women+ health research is significantly underfunded (only ~7% of national health research funding in Canada) and understudied. Crucially, sex and gender are often not consistently reported in studies, leading to misdiagnoses, ineffective treatments, and adverse drug reactions.
• Systemic Barriers: Access to primary care is a major issue, with significant portions of the population lacking a regular provider. Previous consultations identified systemic barriers and long wait times but did not systematically prioritize researchable questions across diverse stakeholder groups.

2. Methodology

The study employs a modified Priority Setting Partnership (PSP) methodology based on the James Lind Alliance (JLA) framework. The process is designed to be collaborative, inclusive, and evidence-informed, consisting of five sequential phases:

• Phase 1: Steering Advisory Committee: A diverse steering group comprising women+, healthcare professionals, researchers, policymakers, and public representatives will oversee the scope, survey design, and prioritization process.
• Phase 2: Gathering Uncertainties:
  • Data Collection: A bilingual (English/French) open-access online survey (via REDCap) will be distributed across the three Maritime provinces for six weeks.
  • Participants: Targeted recruitment aims for diversity in age, gender identity, geography (urban/rural), and lived experience. Participants include those with lived experience, caregivers, healthcare providers, researchers, and policymakers.
  • Output: Participants submit open-ended questions regarding unanswered research needs in Women+ health.
• Phase 3: Data Processing & Verification:
  • Cleaning: Submitted questions are cleaned, de-duplicated, and grouped thematically.
  • Evidence Gap Mapping: The research team conducts a parallel review of existing literature and an evidence gap map for the Atlantic provinces. Questions already answered by current evidence are removed; only verified "uncertainties" remain.
• Phase 4: Interim Priority Setting:
  • A second survey is distributed to the initial list of verified uncertainties.
  • Participants rank questions within thematic clusters (e.g., cancer, perinatal, mental health) using a 5-point Likert scale.
  • Output: A "shortlist" of 20–25 top priorities per theme is generated.
• Phase 5: Final Consensus Workshop:
  • A hybrid (in-person/virtual) one-day workshop involving ~30 purposively selected participants.
  • Methods: Participatory techniques (journey mapping, dot-voting, empathy mapping) are used to facilitate dialogue.
  • Goal: To reach a consensus on a final, ranked Top 10 list of research priorities.

Data Analysis:

• Qualitative: Content analysis using NVivo for open-ended survey responses.
• Quantitative: Descriptive statistics using SPSS for demographics and ranking patterns.
• Reporting: Findings will adhere to the REPRISE (Reporting guideline for Priority Setting of Health Research) guidelines.

3. Key Contributions

• Inclusive Definition: The study operationalizes the term "Women+" to ensure gender-inclusivity while maintaining the visibility of women's specific health needs, addressing the historical exclusion of gender-diverse individuals in women's health research.
• Regional Specificity: Unlike national studies, this protocol focuses specifically on the unique healthcare infrastructure and demographic challenges of the Maritime provinces.
• Methodological Rigor: By integrating an Evidence and Gap Map review directly into the priority-setting process, the study ensures that the final priorities represent genuine uncertainties rather than topics already covered by existing research.
• Stakeholder Engagement: The protocol explicitly centers the voices of those with lived experience alongside clinicians and policymakers, moving beyond traditional top-down research agendas.

4. Anticipated Results

• Primary Output: A collaboratively developed, evidence-informed Top 10 list of research priorities for Women+ health in the Maritime provinces.
• Secondary Outputs:
  • Identification of thematic gaps in existing regional research.
  • Assessment of feasibility considerations for future study design.
  • A transparent, replicable model for inclusive priority setting that can be adapted for other regions or health contexts.
• Data Note: As this is a protocol paper, no empirical results (the actual Top 10 list) are yet available; the paper outlines the plan to generate them.

5. Significance and Impact

• Policy and Funding: The resulting priority list will serve as a strategic foundation to guide future research funding decisions (e.g., by the IWK Foundation and government bodies) and policy initiatives, ensuring resources are allocated to the most critical unanswered questions.
• Health Equity: By addressing the specific needs of Women+ and gender-diverse individuals, the study aims to reduce health inequities, improve diagnostic accuracy, and enhance treatment outcomes in the region.
• System Strengthening: The process fosters collaboration between disparate stakeholders (patients, providers, researchers, and policymakers), strengthening the regional research network and capacity for patient-oriented research.
• Knowledge Mobilization: The project commits to disseminating findings through accessible lay summaries, infographics, and policy briefs, ensuring that the community remains informed and that the priorities directly influence health system planning.

Funding & Ethics:

• Funder: IWK Foundation.
• Ethics: Approved by the IWK Health Research Ethics Board (REB#1032488).
• Status: Preprint (not yet peer-reviewed).