NDLI: Exploring patient and caregiver perceptions of the meaning of the patient partner role: a qualitative study

Content Provider	Springer Nature : BioMed Central
Author	Chudyk, Anna Maria Stoddard, Roger McCleary, Nicola Duhamel, Todd A. Shimmin, Carolyn Hickes, Serena Schultz, Annette S. H.
Abstract	Background The re-conceptualization of patients’ and caregivers’ roles in research from study participants to co-researchers (“patient partners”) has led to growing pains within and outside the research community, such as how to effectively engage patients in research and as part of interdisciplinary teams. To support the growth of more successful research partnerships by developing a shared understanding of how patient partners conceptualize and contribute to their role, this study aimed to explore patient partners’ motivations for engagement and understanding of their role. Methods We conducted semi-structured interviews with participants (n = 13) of an online survey of activities and impacts of patient engagement in Strategy for Patient-Oriented Research projects. Eligibility criteria included being a patient partner that indicated interest in interview participation upon survey completion, the ability to read/write in English and provide informed consent. Data were analyzed thematically using an inductive, codebook thematic analysis. Results Illuminating the lived/living patient and caregiver experience was central to how most patient partners conceptualized the role in terms of its definition, purpose, value, and responsibilities. Participants also identified four additional categories of motivations for becoming a patient partner and contributions that patient partners make to research that build upon and are in addition to sharing their lived/living experiences. Lastly, participants highlighted important connotations of the term patient partner, including temporal and context-specific considerations for the term “patient” and what “partner” may imply about the nature of the research relationship. Conclusions At the onset of partnership, academic researchers and patient partners must create the space necessary to discuss and understand each other’s underlying motivations for partnering and their perspectives on the purpose, value, and responsibilities of the patient partner role. These early conversations should help unearth what research partners hope to get out of and feel that they are able to contribute to engaging, and in such contribute to the development of reciprocal relationships that work towards shared and valued goals. Trial registration Not applicable.
Related Links	https://researchinvolvement.biomedcentral.com/counter/pdf/10.1186/s40900-023-00511-9.pdf
Ending Page	16
Page Count	16
Starting Page	1
File Format	HTM / HTML
ISSN	20567529
DOI	10.1186/s40900-023-00511-9
Journal	Research Involvement and Engagement
Issue Number	1
Volume Number	9
Language	English
Publisher	BioMed Central
Publisher Date	2023-11-28
Access Restriction	Open
Subject Keyword	Medicine Public Health Patient and public involvement Stakeholder engagement Patient engagement Patient engagement in research Patient-oriented research Qualitative interviews Medicine/Public Health
Content Type	Text
Resource Type	Article
Subject	Health Professions Health (social science)

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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Publisher Correction to: Exploring patient and caregiver perceptions of the meaning of the patient partner role: a qualitative study

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