Engaging with communities, engaging with patients: Amendment to the NAPCRG 1998 Policy Statement on responsible Research with Communities

Michele L. Allen, Jon Salsberg, Michaela Knot, Joseph W. LeMaster, Maret Felzien, John M. Westfall, Carol P. Herbert, Katherine Vickery, Kathleen A. Culhane-Pera, Vivian R. Ramsden, Linda Zittleman, Ruth Elwood Martin, Ann C. Macaulay

Research output: Contribution to journalReview article

  • 2 Citations

Abstract

Background. In 1998, the North American Primary Care Research Group (NAPCRG) adopted a groundbreaking Policy Statement endorsing responsible participatory research (PR) with communities. Since that time, PR gained prominence in primary care research. Objectives. To reconsider the original 1998 Policy Statement in light of increased uptake of PR, and suggest future directions and applications for PR in primary care. This work contributed to an updated Policy Statement endorsed by NAPCRG in 2015. Methods. 32 university and 30 community NAPCRG-affiliated research partners, convened a workshop to document lessons learned about implementing processes and principles of PR. This document emerged from that session and reflection and discussion regarding the original Policy Statement, the emerging PR literature, and our own experiences. Results. The foundational principles articulated in the 1998 Policy Statement remain relevant to the current PR environment. Lessons learned since its publication include that the maturation of partnerships is facilitated by participatory processes that support increased community responsibility for research projects, and benefits generated through PR extend beyond research outcomes. Future directions that will move forward the field of PR in primary care include: (i) improve assessment of PR processes to better delineate the links between how PR teams work together and diverse PR outcomes, (ii) increase the number of models incorporating PR into translational research from project inception to dissemination, and (iii) increase application of PR approaches that support patient engagement in clinical settings to patient-provider relationship and practice change research. Conclusion. PR has markedly altered the manner in which primary care research is undertaken in partnership with communities and its principles and philosophies continue to offer means to assure that research results and processes improve the health of all communities.

LanguageEnglish (US)
Pages313-321
Number of pages9
JournalFamily Practice
Volume34
Issue number3
DOIs
StatePublished - Jun 1 2017

Fingerprint

Primary Health Care
Research
Outcome Assessment (Health Care)
Patient Participation
Translational Medical Research

Keywords

  • Community-based participatory research
  • Patient engagement
  • Primary care
  • Translational research

Cite this

Engaging with communities, engaging with patients : Amendment to the NAPCRG 1998 Policy Statement on responsible Research with Communities. / Allen, Michele L.; Salsberg, Jon; Knot, Michaela; LeMaster, Joseph W.; Felzien, Maret; Westfall, John M.; Herbert, Carol P.; Vickery, Katherine; Culhane-Pera, Kathleen A.; Ramsden, Vivian R.; Zittleman, Linda; Martin, Ruth Elwood; Macaulay, Ann C.

In: Family Practice, Vol. 34, No. 3, 01.06.2017, p. 313-321.

Research output: Contribution to journalReview article

Allen, ML, Salsberg, J, Knot, M, LeMaster, JW, Felzien, M, Westfall, JM, Herbert, CP, Vickery, K, Culhane-Pera, KA, Ramsden, VR, Zittleman, L, Martin, RE & Macaulay, AC 2017, 'Engaging with communities, engaging with patients: Amendment to the NAPCRG 1998 Policy Statement on responsible Research with Communities' Family Practice, vol. 34, no. 3, pp. 313-321. https://doi.org/10.1093/fampra/cmw074
Allen, Michele L. ; Salsberg, Jon ; Knot, Michaela ; LeMaster, Joseph W. ; Felzien, Maret ; Westfall, John M. ; Herbert, Carol P. ; Vickery, Katherine ; Culhane-Pera, Kathleen A. ; Ramsden, Vivian R. ; Zittleman, Linda ; Martin, Ruth Elwood ; Macaulay, Ann C. / Engaging with communities, engaging with patients : Amendment to the NAPCRG 1998 Policy Statement on responsible Research with Communities. In: Family Practice. 2017 ; Vol. 34, No. 3. pp. 313-321.
@article{200b9befbf5c4e47a42233f6cdc9d876,
title = "Engaging with communities, engaging with patients: Amendment to the NAPCRG 1998 Policy Statement on responsible Research with Communities",
abstract = "Background. In 1998, the North American Primary Care Research Group (NAPCRG) adopted a groundbreaking Policy Statement endorsing responsible participatory research (PR) with communities. Since that time, PR gained prominence in primary care research. Objectives. To reconsider the original 1998 Policy Statement in light of increased uptake of PR, and suggest future directions and applications for PR in primary care. This work contributed to an updated Policy Statement endorsed by NAPCRG in 2015. Methods. 32 university and 30 community NAPCRG-affiliated research partners, convened a workshop to document lessons learned about implementing processes and principles of PR. This document emerged from that session and reflection and discussion regarding the original Policy Statement, the emerging PR literature, and our own experiences. Results. The foundational principles articulated in the 1998 Policy Statement remain relevant to the current PR environment. Lessons learned since its publication include that the maturation of partnerships is facilitated by participatory processes that support increased community responsibility for research projects, and benefits generated through PR extend beyond research outcomes. Future directions that will move forward the field of PR in primary care include: (i) improve assessment of PR processes to better delineate the links between how PR teams work together and diverse PR outcomes, (ii) increase the number of models incorporating PR into translational research from project inception to dissemination, and (iii) increase application of PR approaches that support patient engagement in clinical settings to patient-provider relationship and practice change research. Conclusion. PR has markedly altered the manner in which primary care research is undertaken in partnership with communities and its principles and philosophies continue to offer means to assure that research results and processes improve the health of all communities.",
keywords = "Community-based participatory research, Patient engagement, Primary care, Translational research",
author = "Allen, {Michele L.} and Jon Salsberg and Michaela Knot and LeMaster, {Joseph W.} and Maret Felzien and Westfall, {John M.} and Herbert, {Carol P.} and Katherine Vickery and Culhane-Pera, {Kathleen A.} and Ramsden, {Vivian R.} and Linda Zittleman and Martin, {Ruth Elwood} and Macaulay, {Ann C.}",
year = "2017",
month = "6",
day = "1",
doi = "10.1093/fampra/cmw074",
language = "English (US)",
volume = "34",
pages = "313--321",
journal = "Family Practice",
issn = "0263-2136",
publisher = "Oxford University Press",
number = "3",

}

TY - JOUR

T1 - Engaging with communities, engaging with patients

T2 - Family Practice

AU - Allen, Michele L.

AU - Salsberg, Jon

AU - Knot, Michaela

AU - LeMaster, Joseph W.

AU - Felzien, Maret

AU - Westfall, John M.

AU - Herbert, Carol P.

AU - Vickery, Katherine

AU - Culhane-Pera, Kathleen A.

AU - Ramsden, Vivian R.

AU - Zittleman, Linda

AU - Martin, Ruth Elwood

AU - Macaulay, Ann C.

PY - 2017/6/1

Y1 - 2017/6/1

N2 - Background. In 1998, the North American Primary Care Research Group (NAPCRG) adopted a groundbreaking Policy Statement endorsing responsible participatory research (PR) with communities. Since that time, PR gained prominence in primary care research. Objectives. To reconsider the original 1998 Policy Statement in light of increased uptake of PR, and suggest future directions and applications for PR in primary care. This work contributed to an updated Policy Statement endorsed by NAPCRG in 2015. Methods. 32 university and 30 community NAPCRG-affiliated research partners, convened a workshop to document lessons learned about implementing processes and principles of PR. This document emerged from that session and reflection and discussion regarding the original Policy Statement, the emerging PR literature, and our own experiences. Results. The foundational principles articulated in the 1998 Policy Statement remain relevant to the current PR environment. Lessons learned since its publication include that the maturation of partnerships is facilitated by participatory processes that support increased community responsibility for research projects, and benefits generated through PR extend beyond research outcomes. Future directions that will move forward the field of PR in primary care include: (i) improve assessment of PR processes to better delineate the links between how PR teams work together and diverse PR outcomes, (ii) increase the number of models incorporating PR into translational research from project inception to dissemination, and (iii) increase application of PR approaches that support patient engagement in clinical settings to patient-provider relationship and practice change research. Conclusion. PR has markedly altered the manner in which primary care research is undertaken in partnership with communities and its principles and philosophies continue to offer means to assure that research results and processes improve the health of all communities.

AB - Background. In 1998, the North American Primary Care Research Group (NAPCRG) adopted a groundbreaking Policy Statement endorsing responsible participatory research (PR) with communities. Since that time, PR gained prominence in primary care research. Objectives. To reconsider the original 1998 Policy Statement in light of increased uptake of PR, and suggest future directions and applications for PR in primary care. This work contributed to an updated Policy Statement endorsed by NAPCRG in 2015. Methods. 32 university and 30 community NAPCRG-affiliated research partners, convened a workshop to document lessons learned about implementing processes and principles of PR. This document emerged from that session and reflection and discussion regarding the original Policy Statement, the emerging PR literature, and our own experiences. Results. The foundational principles articulated in the 1998 Policy Statement remain relevant to the current PR environment. Lessons learned since its publication include that the maturation of partnerships is facilitated by participatory processes that support increased community responsibility for research projects, and benefits generated through PR extend beyond research outcomes. Future directions that will move forward the field of PR in primary care include: (i) improve assessment of PR processes to better delineate the links between how PR teams work together and diverse PR outcomes, (ii) increase the number of models incorporating PR into translational research from project inception to dissemination, and (iii) increase application of PR approaches that support patient engagement in clinical settings to patient-provider relationship and practice change research. Conclusion. PR has markedly altered the manner in which primary care research is undertaken in partnership with communities and its principles and philosophies continue to offer means to assure that research results and processes improve the health of all communities.

KW - Community-based participatory research

KW - Patient engagement

KW - Primary care

KW - Translational research

UR - http://www.scopus.com/inward/record.url?scp=85027194592&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85027194592&partnerID=8YFLogxK

U2 - 10.1093/fampra/cmw074

DO - 10.1093/fampra/cmw074

M3 - Review article

VL - 34

SP - 313

EP - 321

JO - Family Practice

JF - Family Practice

SN - 0263-2136

IS - 3

ER -