Evidence map›Paper›PMID 34863273›Full record

ArticleResearch involvement and engagement2021

Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community.

Emily M Godfrey, Erin K Thayer, Laura Mentch, Traci M Kazmerski, Georgia Brown, Molly Pam, Morhaf Al Achkar

Registry-linked trialOpen access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Research involvement and engagement, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04999865 (Building Online Research Partnerships to Improve Sexual and Reproductive Health for Women With Cystic Fibrosis), which is not on this map. Cited by 3 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed, 1 pooled it
1.2field-weighted citation impact, top 17% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT04999865 unknown statusnot on this map

Building Online Research Partnerships to Improve Sexual and Reproductive Health for Women With Cystic Fibrosis (CF)

TypeobservationalSponsorUniversity of WashingtonRan2019 to 2021Enrolled100ConditionsCystic Fibrosis, Patient EngagementArms4-part educational program to build patient-engagement methodology capacity
3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 1 synthesis or guideline pooled it, 6 citations in OpenAlex.

  1. Pooled it
  2. Article
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors at 2 institutions in 1 country.

Emily M GodfreyDepartment of Family Medicine, School of Medicine, University of Washington, 4311 11th Ave NE, Box 354982, Seattle, WA, 98105, USA. godfreye@uw.edu.ORCID http://orcid.org/0000-0003-2408-7828
Erin K ThayerDepartment of Family Medicine, School of Medicine, University of Washington, 4311 11th Ave NE, Box 354982, Seattle, WA, 98105, USA.
Laura MentchCystic Fibrosis Reproductive and Sexual Health Collaborative, Seattle, USA.
Traci M KazmerskiDepartment of Pediatrics, School of Medicine, University of Pittsburgh, Pittsburgh, PA, USA.
Georgia BrownCystic Fibrosis Reproductive and Sexual Health Collaborative, Seattle, USA.
Molly PamCystic Fibrosis Reproductive and Sexual Health Collaborative, Seattle, USA.
Morhaf Al AchkarDepartment of Family Medicine, School of Medicine, University of Washington, 4311 11th Ave NE, Box 354982, Seattle, WA, 98105, USA.
University of Washington · USUniversity of Pittsburgh · US

Funding

Transform Dissemination and Implementation Science in CTSA ProgramsUL1TR002319 · NCATS · UNIVERSITY OF WASHINGTON · PI John K. Amory · 2017 to 2026
$100.0M
NCATS NIH HHS UL1 TR002319NIH HHS UL1 TR002319Patient-Centered Outcomes Research Institute 10569-UWASH
6 · The paper itself

Abstract

backgroundPatient-centered outcomes research (PCOR) emphasizes patient-generated research priorities and outcomes, and engages patients throughout every stage of the research process. In the cystic fibrosis (CF) community, patients frequently provide input into research studies, but rarely are integrated onto research teams. Therefore, we developed and evaluated a virtual pilot PCOR training program to build PCOR capacity in the CF community (patients, caregivers, researchers, nonprofit stakeholders and providers). We aimed to show changes among participants' perceived PCOR knowledge (a.k.a PCOR knowledge), confidence in engaging stakeholders, and post-training session satisfaction.

methodsGuided by a prior CF community educational needs assessment, our researcher and patient-partner team co-developed a four-part virtual online training program. We structured the program towards two learner groups: patients/caregivers and researchers/providers. We evaluated participants' PCOR knowledge, confidence in engaging stakeholders, and session satisfaction by administering 5-point Likert participant surveys. We tested for significant differences between median ratings pre- and post-training.

resultsA total of 28 patients/caregivers, and 31 researchers/providers participated. For both learner groups, we found the training resulted in significantly higher PCOR knowledge scores regarding "levels of engagement" (p = .008). For the patient/caregiver group, training significantly increased their PCOR knowledge about the barriers/enablers to doing PCOR (p = .017), effective PCOR team elements (p = .039), active participation (p = .012), and identifying solutions for successful PCOR teams (p = .021). For the researcher/healthcare provider group, training significantly increased participants' ability to describe PCOR core principles (p = .016), identify patient-partners (p = .039), formulate research from patient-driven priorities (p = .039), and describe engagement in research grants (p = .006). No learner group had significant changes in their confidence score. Most participants were either "satisfied" or "very satisfied" with the training program.

conclusionsOverall, our virtual pilot PCOR training program was well received by patients, caregivers, researchers and providers in the CF community. Participants significantly improved their perceived knowledge with core PCOR learning items. Trial registration Retrospectively registered at clinicaltrials.gov (NCT04999865).

Indexed as

Co-developmentCystic fibrosisEducationEvaluationPatient-centered outcomes researchPatient engagementPatient involvementTraining

Identifiers

PMID34863273
PMCPMC8645106
OpenAlexW4200420466

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.