Patient and Public Involvement in research: A journey to co-production

Price, Amy; Clarke, Mike; Staniszewska, Sophie; Chu, Larry F.; Tembo, Doreen; Kirkpatrick, Marjorie; Nelken, Yasmine

doi:10.1016/j.pec.2021.07.021

Cited by 39 publications

(40 citation statements)

References 40 publications

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“…Here we describe a novel, multidisciplinary, multi-stakeholder, patient-centered research partnership, with co-production of knowledge [23][24][25] at its center, that explored and conceptualized the experience of living with early-stage PD. This included identifying cardinal concepts related to symptoms and daily life impacts, which could be used as outcome measures in clinical trials.…”

Section: Introductionmentioning

confidence: 99%

Patient Experience in Early-Stage Parkinson’s Disease: Using a Mixed Methods Analysis to Identify Which Concepts Are Cardinal for Clinical Trial Outcome Assessment

Morel

Cleanthous²,

Andrejack

et al. 2022

Neurol Ther

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Introduction: Qualitative research on patient experiences in early-stage Parkinson's disease (PD) is limited. It is increasingly acknowledged that clinical outcome assessments used in trials do not fully capture the range of symptoms/ impacts that are meaningful to people with early-stage PD. We aimed to conceptualize the patient experience in early-stage PD and identify, from the patient perspective, those cardinal symptoms/impacts which might be more useful to measure in clinical trials. Methods: In a mixed-methods analysis, 50 people with early-stage PD and nine relatives were interviewed. Study design and results interpretation were led by a multidisciplinary

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Section: Introductionmentioning

confidence: 99%

Patient Experience in Early-Stage Parkinson’s Disease: Using a Mixed Methods Analysis to Identify Which Concepts Are Cardinal for Clinical Trial Outcome Assessment

Morel

Cleanthous²,

Andrejack

et al. 2022

Neurol Ther

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“…Although SASI has run before, we developed a novel pilot study to assess empathy in participants ( Figure 1 ). Patients were involved in the coproduction of the study design methodology, with special consideration to patient inclusion, participatory methods, and the inclusion of Everyone Included principles [ 31 ].…”

Section: Methodsmentioning

confidence: 99%

Effects of a 2-Week Remote Learning Program on Empathy and Clinical and Communication Skills in Premedical Students: Mixed Methods Evaluation Study

Srivastava¹,

Price²,

Chu³

2021

JMIR Med Educ

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Background Expressing empathy builds trust with patients, increases patient satisfaction, and is associated with better health outcomes. Research shows that expressing empathy to patients improves patient adherence to medications and decreases patient anxiety and the number of malpractice lawsuits. However, there is a dearth of research on teaching empathy to premedical students. The Clinical Science, Technology, and Medicine Summer Internship of Stanford Medicine (also called the Stanford Anesthesia Summer Institute) is a 2-week collaborative medical internship for high school and undergraduate students to inspire learners to be compassionate health care providers. The summer 2020 program was adapted to accomplish these objectives in a fully remote environment because of the COVID-19 global pandemic. Objective This study aims to measure the change in empathy and competencies of participants in clinical and communication skills before and after program participation. Methods A total of 41 participants completed only the core track of this program, and 39 participants completed the core + research track of this program. Participants in both tracks received instructions in selected clinical skills and interacted directly with patients to improve their interviewing skills. Research track participants received additional instructions in research methodology. All participants completed web-based pre- and postsurveys containing Knowledge and Skills Assessment (KSA) questions. Participant empathy was assessed using the validated Consultation and Relational Empathy measure. A subset of participants completed optional focus groups to discuss empathy. The pre- and post-KSA and Consultation and Relational Empathy measure scores were compared using paired 2-tailed t tests and a linear regression model. Open-ended focus group answers were then analyzed thematically. Results Participants in both tracks demonstrated significant improvement in empathy after the 2-week remote learning course (P=.007 in core track; P<.001 in research track). These results remained significant when controlling for gender and age. A lower pretest score was associated with a greater change in empathy. Participants in both tracks demonstrated significant improvement in KSA questions related to surgical skills (P<.001 in core track; P<.001 in research track), epinephrine pen use (P<.001 in core track; P<.001 in research track), x-ray image interpretation (P<.001 in core track; P<.001 in research track), and synthesizing information to solve problems (P<.001 in core track; P=.05 in research track). The core track participants also showed significant improvements in health communication skills (P=.001). Qualitative analysis yielded 3 themes: empathy as action, empathy as a mindset, and empathy in designing health care systems. Conclusions Summer internships that introduce high school and undergraduate students to the field of health care through hands-on interaction and patient involvement may be an effective way to develop measurable empathy skills when combined with clinical skills training and mentorship. Notably, increases in empathy were observed in a program administered via a remote learning environment.

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“…Unlike being a study participant, where they contribute expertise or information as data, patient and community collaborators are integral members of the research team and bring a unique perspective as potential beneficiaries of the research. As consultants, they may advise on elements such as study protocols, readability of survey items, or final reports, but this role may be ancillary with limited influence; while as investigators or co-producers of research they actively contribute to decisions and steering the research (Price et al, 2021). The evolution of patient, family, and community members in research from advisors to co-principal investigators is observed as a “culture shift” (Pozniak et al, 2021) that occupational therapy researchers should embrace in both discipline-specific and interprofessional research.…”

Section: Patient and Community Engagementin Researchmentioning

confidence: 99%

“…À la différence des participants aux études, qui fournissent de l’expertise et de l’information sous la forme de données, les patients et collaborateurs de la communauté font partie intégrante de l’équipe de recherche et apportent une perspective unique à titre de bénéficiaires potentiels de la recherche. À titre de consultants, ils peuvent se prononcer sur des aspects tels que les protocoles de recherche, la lisibilité des questions de l’enquête ou les rapports finaux, mais ce rôle peut revêtir un caractère auxiliaire et être doté d’une influence limitée, tandis qu’à titre d’investigateurs ou de coproducteurs de la recherche, ils peuvent contribuer activement aux décisions et orienter les recherches (Price et al, 2021). L’évolution des patients, de leur famille et des membres de la communauté dans la recherche, de conseillers à cochercheurs principaux, est considérée comme un changement de culture (Pozniak et al, 2021) que les chercheurs en ergothérapie devraient adopter tant dans leurs recherches interprofessionnelles que dans leurs recherches propres à la discipline.…”

Section: Engagement Des Patients Et De La Communauté Dans La Rechercheunclassified

Advancing Patient and Community Engagement in Occupational Therapy Research

Davidson¹,

Martini²

2022

Can J Occup Ther

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Occupational therapy research has a long and varied history of involving patients, public, and communities in research as advisors, collaborators, and co-researchers. In Canada, funding agencies have expected patients and knowledge users to be research team members for more than a decade, as illustrated in initiatives like the Canadian Institutes for Health Research (CIHR) Strategy for Patient-Oriented Research (CIHR, 2019). However, the extent to which researchers engage with patient or community partners and the quality of engagement varies. The three of us writing this editorial (one patient researcher and two academic researchers) bring our own experiences with research teams to discuss why patient and community engagement in research matters. We advocate for wider inclusion of patient and community collaborators in research teams, integrating an explicit description of this engagement in the methods section of research reports, and appropriate recognition of contributions from patient and community collaborators, including authorship.

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Patient and Public Involvement in research: A journey to co-production

Cited by 39 publications

References 40 publications

Patient Experience in Early-Stage Parkinson’s Disease: Using a Mixed Methods Analysis to Identify Which Concepts Are Cardinal for Clinical Trial Outcome Assessment

Patient Experience in Early-Stage Parkinson’s Disease: Using a Mixed Methods Analysis to Identify Which Concepts Are Cardinal for Clinical Trial Outcome Assessment

Effects of a 2-Week Remote Learning Program on Empathy and Clinical and Communication Skills in Premedical Students: Mixed Methods Evaluation Study

Advancing Patient and Community Engagement in Occupational Therapy Research

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