“Our lab is the community”: Defining essential supporting infrastructure in engagement research

IntroductionEffective patient engagement is central to patient-centered outcomes research. A well-designed infrastructure supports and facilitates patient engagement, enabling study development and implementation. We sought to understand infrastructure needs from recipients of Patient-Centered Outcomes Research Institute (PCORI) pilot grant awards.MethodsWe surveyed recipients of PCORI pilot project awards on self-perceived strengths in engagement infrastructure through PCORI’s Ways of Engaging-Engagement Activity Tool survey, and interviewed leaders of 8 projects who volunteered as exemplars. Descriptive statistics summarized the survey findings. We conducted a thematic analysis of the interview transcripts.ResultsOf the 50 surveyed pilots, 22 answered the engagement infrastructure questions (44% response rate). Survey and interview findings emphasized the importance of committed institutional leadership, ongoing relationships with stakeholder organizations, and infrastructure funding through Clinical and Translational Science Awards, PCORI, and institutional discretionary funds.ConclusionsThese findings highlight the importance of and how to improve upon existing institutional infrastructure.

Download Full-text

Patient engagement in patient-centered outcomes research: challenges, facilitators and actions to strengthen the field

Journal of Comparative Effectiveness Research ◽

10.2217/cer-2016-0075 ◽

2017 ◽

Vol 6 (4) ◽

pp. 363-373 ◽

Cited By ~ 11

Author(s):

Lauren E Ellis ◽

Nancy E Kass

Keyword(s):

Patient Engagement ◽

Outcomes Research ◽

Patient Centered ◽

Research Challenges

Download Full-text

Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute

Quality of Life Research ◽

10.1007/s11136-014-0893-3 ◽

2015 ◽

Vol 24 (5) ◽

pp. 1033-1041 ◽

Cited By ~ 128

Author(s):

Lori Frank ◽

Laura Forsythe ◽

Lauren Ellis ◽

Suzanne Schrandt ◽

Sue Sheridan ◽

...

Keyword(s):

Patient Engagement ◽

Outcomes Research ◽

Patient Centered ◽

Patient Engagement In Research ◽

Research Institute

Download Full-text

Telemedicine use by pediatric rheumatologists during the COVID-19 pandemic

Pediatric Rheumatology ◽

10.1186/s12969-021-00565-7 ◽

2021 ◽

Vol 19 (1) ◽

Author(s):

Rajdeep Pooni ◽

Tova Ronis ◽

Tzielan Lee ◽

Keyword(s):

Clinical Assessment ◽

Patient Engagement ◽

Pediatric Rheumatology ◽

Response Rate ◽

Descriptive Statistics ◽

Electronic Survey ◽

Childhood Arthritis ◽

Survey Response Rate ◽

Qualitative Work ◽

Research Alliance

Abstract Background To characterize various aspects of telemedicine use by pediatric rheumatology providers during the recent pandemic including provider acceptability of telehealth practices, clinical reliability, and clinical appropriateness. Methods An electronic survey was generated and disseminated amongst the Childhood Arthritis and Rheumatology Research Alliance (CARRA) listserv (n = 547). Survey items were analyzed via descriptive statistics by question. Results The survey response rate was 40.8% (n = 223) with the majority of respondents in an attending-level role. We observed that musculoskeletal components of the exam were rated as the most reliable components of a telemedicine exam and 86.5% of survey respondents reported engaging the patient or patient caregiver to help conduct the virtual exam. However, 65.7% of providers reported not being able to elicit the information needed from a telemedicine visit to make a complete clinical assessment. We also noted areas of disagreement regarding areas of patient engagement and confidentiality. We found that approximately one-third (35.8%) of those surveyed felt that their level of burnout was increased due to telemedicine. Conclusion In general, providers found exam reliability (specifically around focused musculoskeletal elements) in telemedicine visits but overall felt that they were unable to generate the information needed to generate a complete clinical assessment. Additionally, there were suggestions that patient engagement and confidentiality varied during telemedicine visits when compared to in-person clinical visits. Further qualitative work is needed to fully explore telemedicine use in pediatric rheumatology.

Download Full-text

Setting an Agenda for Hospital Medicine Research: Making Sure the Right People Are at the Table

Journal of Hospital Medicine ◽

10.12788/3403 ◽

2020 ◽

Vol 15 (6) ◽

pp. 383-384

Author(s):

Alexander F Glick ◽

Ramon EA Jacobs-Shaw ◽

Rebecca E Rosenberg

Keyword(s):

United States ◽

Health System ◽

Patient Engagement ◽

Outcomes Research ◽

Hospital Medicine ◽

The United States ◽

Service Industries ◽

Patient Centered ◽

Medicine Research ◽

The Right

Unlike other service industries, US healthcare has been slower to adopt an approach of asking users (patients) how to make things better. However, patient engagement in systems of healthcare (eg, Patient and Family Advisory Councils [PFAC]) and health system-based research (eg, Patient Centered Outcomes Research Institute [PCORI]) are gaining currency in the United States.1,2

Download Full-text

Assessors’ and trainees’ perceptions of workplace-based assessments in histopathology

Journal of Clinical Pathology ◽

10.1136/jclinpath-2018-205361 ◽

2018 ◽

Vol 71 (12) ◽

pp. 1100-1107 ◽

Cited By ~ 1

Author(s):

Daniel J Brierley ◽

Paula M Farthing ◽

Sandra Zijlstra-Shaw

Keyword(s):

Thematic Analysis ◽

Literature Search ◽

Response Rate ◽

Descriptive Statistics ◽

Free Text ◽

Training Environment ◽

Educational Value ◽

Diagnostic Competence ◽

Fit For Purpose ◽

The Uk

AimWorkplace-based assessments (WBAs) are an integral part of specialist medical and dental training in the UK. Histopathology represents a very different training environment to the surgical specialities so it is important to know that the current WBAs are fit for purpose. A literature search revealed very little evidence regarding the perception of WBAs in histopathology. The aim of this study was therefore to assess the current perception of WBAs in histopathology by assessors and trainees.MethodsA questionnaire was sent to all histopathology assessors and trainees on the Royal College of Pathologists database. Data were analysed using basic descriptive statistics. Free text comments were analysed by thematic analysis.ResultsThe questionnaire was completed by 242/2175 assessors (response rate 11.1%) and 91/519 trainees (response rate 17.5%). There was no significantly different perception of WBAs between trainers and trainees (p>0.05). Key findings included respondents stating that they strongly disagreed or disagreed WBAs identify diagnostic competence (68% of trainees; 62% of assessors), identify trainees in difficulty (69% of trainees; 64% of assessors) or accurately reflect trainee progress (62% of trainees; 59% of assessors). Analysis of free text comments identified three main issues related to WBAs: their utilisation, purpose and design.ConclusionThere was an overall negative perception of WBAs, particularly their perceived regulatory nature. It appears that the current WBAs do not always meet the criteria of a useful test in that they are perceived as being applied variably, produce results with questionable validity and have little apparent educational value.

Download Full-text

Early Assessment Of The 10-Step Patient Engagement Framework For Patient-Centered Outcomes Research Studies: The First 3 Steps

Value in Health ◽

10.1016/j.jval.2016.03.1695 ◽

2016 ◽

Vol 19 (3) ◽

pp. A107

Author(s):

Y Oladeinde ◽

R Newhouse ◽

D Lavallee ◽

J Huang ◽

CD Mullins

Keyword(s):

Patient Engagement ◽

Outcomes Research ◽

Early Assessment ◽

Patient Centered ◽

Research Studies

Download Full-text

Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute

Health Affairs ◽

10.1377/hlthaff.2018.05067 ◽

2019 ◽

Vol 38 (3) ◽

pp. 359-367 ◽

Cited By ~ 45

Author(s):

Laura P. Forsythe ◽

Kristin L. Carman ◽

Victoria Szydlowski ◽

Lauren Fayish ◽

Laurie Davidson ◽

...

Keyword(s):

Patient Engagement ◽

Outcomes Research ◽

Patient Centered ◽

Patient Engagement In Research ◽

Research Institute

Download Full-text

Telemedicine Use by Pediatric Rheumatologists during the COVID-19 Pandemic

10.21203/rs.3.rs-109539/v1 ◽

2020 ◽

Author(s):

Rajdeep Pooni ◽

Tova Ronis ◽

Tzielan Lee

Keyword(s):

Clinical Assessment ◽

Patient Engagement ◽

Pediatric Rheumatology ◽

Response Rate ◽

Descriptive Statistics ◽

Electronic Survey ◽

Childhood Arthritis ◽

Survey Response Rate ◽

Qualitative Work ◽

Research Alliance

Abstract Background To characterize various aspects of telemedicine use by pediatric rheumatology providers during the recent pandemic including provider acceptability of telehealth practices, clinical reliability, and clinical appropriateness. Methods An electronic survey was generated and disseminated amongst the Childhood Arthritis and Rheumatology Research Alliance (CARRA) listserv (n = 547). Survey items were analyzed via descriptive statistics by question and correlates amongst burnout and satisfaction with telemedicine were examined via ANOVA with appropriate statistical software. Results The survey response rate was 40.8% (n = 223) with the majority of respondents in an attending-level role. We observed that musculoskeletal components of the exam were rated as the most reliable components of a telemedicine exam and 85.6% of survey respondents reported engaging the patient or patient caregiver to help conduct the virtual exam. However, 63.5% of providers reported not being able to elicit the information needed from a telemedicine visit to make a complete clinical assessment. We also noted areas of disagreement regarding areas of patient engagement and confidentiality. We found that approximately one-third (33.5%) of those surveyed felt that their level of burnout was increased due to telemedicine. Conclusion In general, providers found exam reliability (specifically around focused musculoskeletal elements) in telemedicine visits but overall felt that they were unable to generate the information needed to generate a complete clinical assessment. Additionally, there were suggestions that patient engagement and confidentiality varied during telemedicine visits when compared to in-person clinical visits. Further qualitative work is needed to fully explore telemedicine use in pediatric rheumatology.

Download Full-text