Student or educator? Sign up with your school email and get 6 months of Pro free.
Cited by 628

The DOI matches its Crossref record; 9 of the 9 references it cites were found in a registry or an index.

Patient and service user engagement in research: a systematic review and synthesized framework

Open access
Shippee, Nathan D., Domecq Garces, Juan Pablo, Prutsky Lopez, Gabriela J., Wang, Zhen, Elraiyah, Tarig A., Nabhan, Mohammed, Brito, Juan P., Boehmer, Kasey, Hasan, Rim, Firwana, Belal, Erwin, Patricia J., Montori, Victor M., Murad, M Hassan·2015·Health Expectations

Abstract

Background: There is growing attention towards increasing patient and service user engagement ( PSUE ) in biomedical and health services research. Existing variations in language and design inhibit reporting and indexing, which are crucial to comparative effectiveness in determining best practices. Objective: This paper utilizes a systematic review and environmental scan to derive an evidence‐based framework for PSUE . Design: A metanarrative systematic review and environmental scan/manual search using scientific databases and other search engines, along with feedback from a patient advisory group ( PAG ). Eligible sources: English‐language studies, commentaries, grey literature and other sources (including systematic and non‐systematic reviews) pertaining to patient and public involvement in biomedical and health services research. Data extracted: Study description (e.g. participant demographics, research setting) and design, if applicable; frameworks, conceptualizations or planning schemes for PSUE ‐related endeavours; and methods for PSUE initiation and gathering patients'/service users' input or contributions. Results: Overall, 202 sources were included and met eligibility criteria; 41 of these presented some framework or conceptualization of PSUE . Sources were synthesized into a two‐part framework for PSUE: (i) integral PSUE components include patient and service user initiation, reciprocal relationships, colearning and re‐assessment and feedback, (ii) sources describe PSUE at several research stages, within three larger phases: preparatory, execution and translational. Discussion and Conclusions: Efforts at developing a solid evidence base on PSUE are limited by the non‐standard and non‐empirical nature of much of the literature. Our proposed two‐part framework provides a standard structure and language for reporting and indexing to support comparative effectiveness and optimize PSUE .

Overview

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Integrity signals

Registry

Crossref · 10.1111/hex.12090

Cites

9 of 9 references verified0 citation errors · 0 not checkable

Statistics

Verification

Claims the paper makes

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

The self-check needs the paper’s full text.

Citations

Cites

Show all 9 references

Research works printed but not linked: 94

  1. 10.1080/09638230400017137 · DOI
  2. 10.1111/j.1369-7625.2004.00232.x · DOI
  3. 10.1177/1049732309331869 · DOI · Paper page
  4. Boivin A, 2010, Patient and public involvement in clinical guidelines: international experiences and future perspectives, Quality and Safety in Health Care, 19, 1
  5. 10.1111/j.1369-7625.2009.00549.x · DOI · Paper page
  6. 10.1161/01.STR.0000204053.36966.80 · DOI
  7. 10.1093/ndt/gfn207 · DOI
  8. 10.1111/j.1369-7625.2005.00347.x · DOI
  9. 10.1016/j.socscimed.2004.12.001 · DOI · Paper page
  10. 10.1089/152460902317586010 · DOI
  11. 10.1192/bjp.180.1.1 · DOI · Paper page
  12. 10.1111/j.1369-7625.2008.00502.x · DOI
  13. 10.1046/j.1365-2354.2002.00341.x · DOI
  14. 10.1177/1534735404273727 · DOI
  15. Brett J, 2010, The PIRICOM Study: A Systematic Review of the Conceptualisation, Measurement, Impact and Outcomes of Patients and Public Involvement in Health and Social Care Research
  16. 10.1037/a0016387 · DOI · Paper page
  17. 10.1016/j.socscimed.2004.11.023 · DOI · Paper page
  18. 10.1111/j.1369-7625.2011.00661.x · DOI
  19. 10.1191/1463423606pc269oa · DOI
  20. 10.1136/bmj.322.7285.519 · DOI · Paper page
  21. 10.1016/S0168-8510(01)00214-7 · DOI · Paper page
  22. 10.1111/j.1369-7625.2009.00573.x · DOI
  23. 10.1002/art.22091 · DOI · Paper page
  24. 10.1046/j.1365-2753.2003.00376.x · DOI
  25. 10.1111/j.1369-7625.2010.00607.x · DOI
  26. 10.1111/j.1365-2702.2005.01162.x · DOI
  27. 10.1016/j.pec.2006.02.009 · DOI
  28. Faridi Z, 2007, Community‐based participatory research: necessary next steps, Preventing Chronic Disease, 4, A70
  29. 10.1111/j.1447-0349.2010.00719.x · DOI
  30. Chambers R, 2004, Why don't health researchers report consumer involvement?, Quality in Primary Care, 12, 151
  31. 10.1111/j.1369-7625.2007.00451.x · DOI
  32. 10.1177/1740774508090211 · DOI
  33. 10.1353/cpr.0.0019 · DOI
  34. Redwood D, 2010, Community‐based participatory research in a large cohort study of chronic diseases among Alaska native adults, Progress in Community Health Partnerships, 4, 325, 10.1353/cpr.2010.a406088 · DOI
  35. 10.5042/wwop.2011.0117 · DOI
  36. 10.1186/1471-2474-10-85 · DOI
  37. 10.1016/j.envres.2003.08.003 · DOI
  38. 10.1353/cpr.0.0068 · DOI
  39. 10.13031/2013.24351 · DOI
  40. 10.1089/jwh.2010.2059 · DOI
  41. 10.1177/0164027509351477 · DOI
  42. Fawcett SB, 1994, Intervention research: Design and development for human service
  43. 10.1111/j.1470-6431.2010.00901.x · DOI
  44. Turner M, 2005, User Controlled Research: Its Meanings and Potential
  45. 10.1080/01612840701792258 · DOI
  46. 10.2105/AJPH.2009.178137 · DOI · Paper page
  47. 10.1016/j.outlook.2009.01.003 · DOI
  48. 10.1300/J005v19n01_01 · DOI
  49. Danley KE, 2005, A Handbook for Participatory Action Research
  50. Becker AB, 2005, Methods in Community‐Based Participatory Research for Health
  51. 10.1046/j.1365-2524.1998.00105.x · DOI
  52. 10.1111/j.1369-7625.2007.00476.x · DOI · Paper page
  53. Hall V, 2009, Reflections on engaging in participatory research, Evidence Based Midwifery, 7, 40
  54. 10.1136/bmjqs.2010.049031 · DOI
  55. 10.1007/s11524-006-9110-1 · DOI · Paper page
  56. 10.1186/1743-8462-4-13 · DOI
  57. National Health and Medical Research Council, 2005, A Model Framework for Consumer and Community Participation in Health and Medical Research
  58. 10.1038/nbt.1837 · DOI · Paper page
  59. 10.4065/mcp.2011.0312 · DOI
  60. 10.1046/j.1440-172X.1998.00063.x · DOI
  61. 10.1111/j.1369-7625.2007.00436.x · DOI · Paper page
  62. 10.2105/AJPH.2008.147462 · DOI
  63. 10.1111/j.1369-7625.2010.00648.x · DOI
  64. 10.1111/j.1369-7625.2010.00652.x · DOI
  65. Staniszewska S, The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research, International Journal of Technology Assessment
  66. 10.1016/S0197-2456(96)00236-X · DOI · Paper page
  67. 10.1136/bmj.311.7017.1382 · DOI
  68. 10.3310/hta8420 · DOI · Paper page
  69. 10.1016/S0277-9536(97)00063-4 · DOI · Paper page
  70. 10.1016/j.socscimed.2005.10.008 · DOI
  71. 10.1046/j.1369-6513.1999.00042.x · DOI
  72. 10.1176/appi.ps.56.10.1315 · DOI
  73. 10.2106/00004623-199707000-00003 · DOI · Paper page
  74. 10.1353/cpr.0.0011 · DOI
  75. 10.2105/AJPH.2007.113571 · DOI · Paper page
  76. 10.1289/ehp.01109s3449 · DOI
  77. 10.1080/09650790701833063 · DOI
  78. 10.1136/bmj.310.6990.1315 · DOI · Paper page
  79. 10.1007/s11524-006-9112-z · doi:10.1007/s11524-006-9112-z
  80. 10.1177/109019819502200404 · doi:10.1177/109019819502200404
  81. 10.1136/qhc.10.1.10 · DOI
  82. Sayers J, 2009, Clinical trial registries: a survey of patient advocate group perceptions, Drug Information Journal, 2, 195, 10.1177/009286150904300211 · doi:10.1177/009286150904300211
  83. 10.1177/0969733010379176 · doi:10.1177/0969733010379176
  84. 10.1371/journal.pmed.1000194 · DOI
  85. Involvement Team: NHS County Durham and Darlington, 2011, Patient & Public Involvement Toolkit: a quick guide to support healthcare commissioners, NHS
  86. 10.1146/annurev.publhealth.27.021405.102207 · DOI · Paper page
  87. 10.1080/07399330590933944 · DOI
  88. 10.1016/j.healthpol.2004.11.013 · DOI
  89. 10.1016/j.healthpol.2009.12.004 · doi:10.1016/j.healthpol.2009.12.004
  90. 10.1177/0272989X11424401 · DOI · Paper page
  91. 10.1186/1472‐6947‐5‐23 · DOI · Paper page
  92. 10.1007/s10728-008-0099-3 · DOI
  93. Cancer Australia and Cancer Voices Australia, 2011, National Framework for Consumer Involvement in Cancer Control
  94. Staley K, 2009, Exploring Impact: Public involvement in NHS, Public Health and Social Care Research

Cited by

See all 628

Metadata

Authors
Shippee, N. D., Domecq Garces, J. P., Prutsky Lopez, G. J., Wang, Z., Elraiyah, T. A., Nabhan, M., Brito, J. P., Boehmer, K., Hasan, R., Firwana, B., Erwin, P. J., Montori, V. M., & Murad, M. H.
Venue
Health Expectations
Publisher
Wiley
Published
2013-06-03
Volume
18
Issue
5
Pages
1151-1166
ISSN
  • 1369-6513 (ISSN-L)
  • 1369-7625
OpenAlex
W2028994146
Cited by
628
References
9
FWCI
3.90
Type
journal article
Language
en
Open access
bronze
Funders
Patient-Centered Outcomes Research Institute (PCORI)

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

What counts as a claim ›How we measure confidence ›How we check this ›

Are you an author, or do you see a problem with this page? Request a review

How to cite

Cite CoChat for the checks on this page, and the paper for its own findings.

This page
CoChat. (2026). Citation check: Patient and service user engagement in research: a systematic review and synthesized framework. https://app.cochat.ai/papers/10.1111/hex.12090
The paper
Shippee, N. D., Domecq Garces, J. P., Prutsky Lopez, G. J., Wang, Z., Elraiyah, T. A., Nabhan, M., Brito, J. P., Boehmer, K., Hasan, R., Firwana, B., Erwin, P. J., Montori, V. M., & Murad, M. H. (2015). Patient and service user engagement in research: a systematic review and synthesized framework. Health Expectations. https://doi.org/10.1111/hex.12090

Data sources

Bibliographic data: Semantic Scholar, OpenAlex, Crossref.

Contains information from the Semantic Scholar Academic Graph Datasets, made available under the ODC Attribution License (ODC-BY 1.0).

Semantic Scholar’s data is described in: Kinney, R., et al. (2023). The Semantic Scholar Open Data Platform. arXiv:2301.10140.