Priority questions for TREC data


Priority setting is a strategy for bringing together different groups of people with a common interest to work together and identify priority areas for research. This strategy is often used as a way to bring citizens, patients, or other individuals with lived experience into discussions about research priorities. They work with clinicians or other experts to jointly identify priorities through a process designed to ensure an equal voice.

Why did TREC undertake the priority setting?

In 2016, TREC established a citizen advisory group known as Voices of Individuals, Family and Friend Care Givers Educating Us (VOICES), which consisted of 12 individuals either living with dementia or who were family caregivers to someone living in long-term care (LTC). 

The VOICES members expressed interest in increasing the use of the TREC Measurement System (TMS), TREC’s repository of data collected since 2007 from LTC homes, staff, and resident assessments. Around the same time, TREC’s other stakeholders, including government and health authority decision makers, expressed a similar interest. 

In early 2018, we were awarded a grant from SPOR/CIHR, with substantial partnered support, to carry out TREC’s own priority setting work in conjunction with other efforts to deepen TREC’s citizen engagement.

What are the top 10 priorities for TREC's dataset?

What is the relationship between different staffing levels and staff mix on resident outcomes?
Is there an association between engagement in quality improvement activities and resident outcomes?
Is there an association between access to medical care (e.g. physicians and nurse practitioners) and resident outcomes?
Are care aides included in decision making about residents?
Is there an association between the work environment (including physical space) and resident outcomes?
Is there an association between engagement in quality improvement activities and staff’s quality of work life and work environment?
What resident characteristics are associated with physical restraint use?
What resident characteristics are associated with quality of work life (e.g. burnout) and work engagement?
What leader (e.g. LPN vs RN leader) and leadership qualities are associated with a positive work environment?
Is there an association between resident pain and other quality indicators?

How was TREC’s priority setting work done?

The priority setting process that TREC used was by following these main steps:

1. On-line Survey

Between October and December 2018, we sent an on-line survey to all VOICES members, decision makers, long-term care operators, and other agencies (such as the College of Licensed Practical Nurses of Alberta) who had a pre-existing relationship with TREC. 

We provided a brief summary of the TREC data holdings and asked respondents to tell us what questions they had about residents, staff, care units, and facilities that might be answered with TREC’s data. All responses were in free-text and respondents could write as much, or as little, as they wanted.


2. Analysis of Survey Responses

Seventy-two individuals responded to our survey and provided a total of 840 individual suggestions for research questions. A small team reviewed all suggestions in order to get down to a final list for prioritization. 

First, we removed 445 “out of scope” suggestions; in this case, out of scope suggestions were those that cannot be addressed using the existing TREC data (for example, those related to quality of life). 

We then iteratively reviewed the remaining 395 suggestions and: removed duplicates; collapsed across similar suggestions, removed those already conducted with TREC data; and ensured feasibility with the TREC data. 

This resulted in a final list of 34 research questions based on the survey respondents’ suggestions.

3. Final Workshop

A final in-person workshop was held on March 14, 2019 in Edmonton. The goal of the workshop was for attendees to work together to jointly identify their 10 most important research questions. A sample of target survey respondents were invited to participate.

These included:

  • all VOICES members
  • decision makers from TREC regions
  • owner-operator representatives
  • representatives from our partner funders.

A total of 19 individuals were able to attend the workshop.

Before the workshop, they were provided the full list of 34 research questions and were asked to rank them in order of importance from 1 (most important) to 34 (least important) and to bring their ranked with them on the 14th.

The workshop was led by an experienced facilitator familiar to TREC with support from 2 external facilitators. The workshop was highly structured with morning and afternoon small group activities (small groups were assigned). 

In the morning, attendees each shared their top 3 and bottom 3 research questions and then worked in their groups to rank order all 34 priorities. 

Over lunch, an aggregate ranking was generated based on the rankings provided by each of the small groups. 

In the afternoon, new assigned small groups were provided the aggregate ranked list and asked to re-prioritize as necessary (with a focus on the top 15-20 research questions). 

An updated aggregate ranked list was then generated from the revised small group rankings. The new aggregate list was presented to the larger group for final discussion and approval. Only 1 change was made the final list of 10 priority research questions

What now?

The Top 10 Priorities, along with the remaining suggested research questions, are available to all TREC team members. Investigators and trainees are encouraged to consider these for future projects.

Acknowledgements

We would like to thank our funders: the Canadian Institutes for Health Research (CIHR) Strategy for Patient Oriented Research (SPOR), CapitalCare, the College of Licensed Practical Nurses of Alberta, the Research Department for Interior Health, the Nova Scotia Health Research Foundation, as well as support from the Seniors’ Health Strategic Clinical Network. We would also like to thank all of the individuals who took the time to participate on our survey and the workshop attendees who worked so hard to come to consensus on this list of priorities.



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