| Title |
Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research
|
|---|---|
| Published in |
The Patient - Patient-Centered Outcomes Research, February 2018
|
| DOI | 10.1007/s40271-018-0298-4 |
| Pubmed ID | |
| Authors |
James D. Harrison, Wendy G. Anderson, Maureen Fagan, Edmondo Robinson, Jeffrey Schnipper, Gina Symczak, Catherine Hanson, Martha B. Carnie, Jim Banta, Sherry Chen, Jonathan Duong, Celene Wong, Andrew D. Auerbach |
| Abstract |
The aim was to describe barriers to patient and family advisory council (PFAC) member engagement in research and strategies to support engagement in this context. We formed a study team comprising patient advisors, researchers, physicians, and nurses. We then undertook a qualitative study using focus groups and interviews. We invited PFAC members, PFAC leaders, hospital leaders, and researchers from nine academic medical centers that are part of a hospital medicine research network to participate. All participants were asked a standard set of questions exploring the study question. We used content analysis to analyze data. Eighty PFAC members and other stakeholders (45 patient/caregiver members of PFACs, 12 PFAC leaders, 12 hospital leaders, 11 researchers) participated in eight focus and 19 individual interviews. We identified ten barriers to PFAC member engagement in research. Codes were organized into three categories: (1) individual PFAC member reluctance; (2) lack of skills and training; and (3) problems connecting with the right person at the right time. We identified ten strategies to support engagement. These were organized into four categories: (1) creating an environment where the PFAC members are making a genuine and unique contribution; (2) building community between PFAC members and researchers; (3) best practice activities for researchers to facilitate engagement; and (4) tools and training. Barriers to engaging PFAC members in research include patients' negative perceptions of research and researchers' lack of training. Building community between PFAC members and researchers is a foundation for partnerships. There are shared training opportunities for PFAC members and researchers to build skills about research and research engagement. |
X Demographics
The data shown below were collected from the profiles of 11 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Canada | 3 | 27% |
| United States | 2 | 18% |
| Australia | 1 | 9% |
| New Zealand | 1 | 9% |
| Unknown | 4 | 36% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 7 | 64% |
| Scientists | 4 | 36% |
Mendeley readers
The data shown below were compiled from readership statistics for 55 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 55 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 9 | 16% |
| Student > Master | 8 | 15% |
| Student > Bachelor | 6 | 11% |
| Student > Doctoral Student | 5 | 9% |
| Student > Ph. D. Student | 5 | 9% |
| Other | 6 | 11% |
| Unknown | 16 | 29% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 11 | 20% |
| Social Sciences | 9 | 16% |
| Nursing and Health Professions | 7 | 13% |
| Biochemistry, Genetics and Molecular Biology | 3 | 5% |
| Agricultural and Biological Sciences | 2 | 4% |
| Other | 6 | 11% |
| Unknown | 17 | 31% |
Attention Score in Context
This research output has an Altmetric Attention Score of 8. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 02 March 2019.
All research outputs
#4,449,429
of 23,999,200 outputs
Outputs from The Patient - Patient-Centered Outcomes Research
#155
of 549 outputs
Outputs of similar age
#96,171
of 446,679 outputs
Outputs of similar age from The Patient - Patient-Centered Outcomes Research
#5
of 15 outputs
Altmetric has tracked 23,999,200 research outputs across all sources so far. Compared to these this one has done well and is in the 81st percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 549 research outputs from this source. They typically receive more attention than average, with a mean Attention Score of 7.9. This one has gotten more attention than average, scoring higher than 71% of its peers.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 446,679 tracked outputs that were published within six weeks on either side of this one in any source. This one has done well, scoring higher than 78% of its contemporaries.
We're also able to compare this research output to 15 others from the same source and published within six weeks on either side of this one. This one has gotten more attention than average, scoring higher than 66% of its contemporaries.