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

Abstract Background Patient-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. Methods Guided 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. Results A 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. Conclusions Overall, 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).

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The educational needs and preferences for patient-centered outcomes research in the cystic fibrosis community: A mixed-methods study (Preprint)

10.2196/preprints.24302 ◽

2020 ◽

Author(s):

Emily M. Godfrey ◽

Traci M. Kazmerski ◽

Georgia Brown ◽

Erin K Thayer ◽

Laura Mentch ◽

...

Keyword(s):

Cystic Fibrosis ◽

Training Program ◽

Healthcare Provider ◽

Outcomes Research ◽

Healthcare Providers ◽

Research Subjects ◽

Patient Centered ◽

Research Teams ◽

World Cafe ◽

Training Format

BACKGROUND Cystic fibrosis (CF) is a rare, life-shortening, multi-organ disease that has seen significant increases in life expectancy. Many advances in CF care are due to the active participation of people with CF as research subjects. Yet, most CF research teams do not yet fully partner with people with CF or their caregivers on the research team. OBJECTIVE To determine the interest, knowledge gaps, and desired format for patient-centered outcomes research (PCOR) training in the CF community. METHODS We surveyed patients, caregivers, researchers, research staff and diverse healthcare providers via listservs and social media outreach about their knowledge of, experience with, and preferences for PCOR training components. We followed the survey with three small-group World Café discussion sessions with 22 participants who completed the survey to establish consensus and prioritize key learning components of a PCOR training program. We summarized results using descriptive statistics and thematic analysis. RESULTS A total of 170 participants completed the survey (56% patients/caregivers; 44% researchers/healthcare providers). Among providers, 19% were physicians/advanced practice providers, 20% nurses, 30% social workers, and 24% were from other disciplines. Among all participants, 86% expressed interest in learning about PCOR, although training topics and training format differed between the patient/caregiver and researcher/healthcare provider groups. Before participating in PCOR, patients/caregivers wanted to understand more about expectations of them as partners on PCOR research teams (85%). Researchers/healthcare providers desired information on how to include outcomes important to patients/caregivers (74%) and the quality and impact of PCOR research (70%, 69%, respectively). Patients/caregivers were most interested in learning about the time commitment as a PCOR team member (78%). Researchers/healthcare providers wanted to receive training about how to establish trust (64%) and maintain confidentiality (64%) when patient or caregiver partners are on the PCOR team. During World Café discussions, participants emphasized the importance of addressing the patient/caregiver and research/healthcare provider hierarchy by teaching about transparency, appreciation, creating a common language between the groups, and providing specific training on “how” to do PCOR. CONCLUSIONS Our findings suggest CF community members are interested in PCOR. A high-quality training program would fill a current methodological research gap. This assessment identified the topics and formats desired and can be used to develop targeted training to enhance meaningful PCOR in CF.

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Use of Photovoice to engage stakeholders in planning for patient-centered outcomes research

Research Involvement and Engagement ◽

10.1186/s40900-019-0166-y ◽

2019 ◽

Vol 5 (1) ◽

Cited By ~ 1

Author(s):

Jill D. Nault Connors ◽

Marshall J. Conley ◽

Laura S. Lorenz

Keyword(s):

Emergency Department ◽

Health System ◽

Lived Experience ◽

Outcomes Research ◽

Research Process ◽

Patient Centered ◽

Emergency Department Care ◽

System Leaders ◽

Multi Stakeholder ◽

The Impact

Abstract Background Research is needed to inform patient and provider decisions about how to best care for patients who go to the emergency department with complaints of chest pain when their symptoms are due to anxiety rather than a heart problem. However, this research may not be a high priority due, in part, to a lack of awareness for the severity of anxiety symptoms and the impact of anxiety on peoples’ daily lives. In this commentary article, we highlight the use of Photovoice as a unique method to share patients’ lived experience of anxiety with providers, researchers, and health system leaders. Main text A brief background on Photovoice methods, the process of patient partner involvement in Photovoice, and the project’s Photovoice results (posters, photos and captions) is presented. Conclusion Photovoice achieved its intended effects of increasing awareness of all stakeholders about the burden of anxiety in patients’ lives and the imperative of improving emergency department care for anxiety. This resulted in increased participation in a multi-stakeholder research partnership, critical health system support that included costs to the health system associated with implementing interventions to be tested, and submission of a patient-centered outcomes research proposal that is currently under review. In addition, Photovoice had positive benefits for participants including a therapeutic effect, may have increased group cohesion, and empowerment of patients as partners in the research process.

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Evaluating the Impact of Training in Obesity Prevention Methods on the Counseling, Knowledge, and Skills of WIC Nutritionists in Georgia, 2014-2015

Public Health Reports ◽

10.1177/0033354917730332 ◽

2017 ◽

Vol 132 (2_suppl) ◽

pp. 16S-23S

Author(s):

Wendy Palmer ◽

Danielle Henderson ◽

Barbara Stahnke ◽

Katherine Shary ◽

Trisha Hardy ◽

...

Keyword(s):

Behavior Change ◽

Motivational Interviewing ◽

Training Program ◽

Obesity Prevention ◽

Weight Status ◽

Positive Impact ◽

Training Session ◽

Evidence Based ◽

Patient Centered ◽

The Impact

Objectives: Motivational interviewing, a client-centered intervention method focused on enhancing intrinsic motivation for behavior change, shows a positive impact on children’s weight status (ie, stabilizing or slowing down weight gain as a child grows). We evaluated the impact of a training program on knowledge and adoption of evidence-based obesity prevention counseling strategies among counselors from Georgia’s Special Supplemental Nutrition Program for Women, Infants, and Children (WIC). Methods: Between July 2014 and September 2015, Children’s Healthcare of Atlanta’s Strong4Life program provided 388 WIC counselors in Georgia with a 2-hour training session on motivational interviewing, patient-centered counseling, and goal setting for obesity prevention. We evaluated the training using (1) self-administered pre- and post-training surveys that assessed knowledge of counseling strategies, (2) post-training observation of counseling interactions, and (3) a review of behavior change goal quality pre- and post-training in a random sample of 200 WIC client charts. Results: In a comparison of pre-training knowledge with immediate post-training knowledge among 388 counselors, 81% vs 91% ( P < .001) knew that, to be effective, goals must be important to clients, and 66% vs 94% ( P < .001) knew the 5 A’s (assess, advise, agree, assist, arrange) of counseling. Knowledge improvements were sustained at 3 months post-training. We observed no improvements in the quality of chart-documented behavior goals. Conclusions: WIC nutrition counselors in Georgia were aware of evidence-based counseling strategies but did not consistently apply them. The training program was helpful, but time and additional support are needed to adopt new practices.

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