{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,16]],"date-time":"2026-09-16T22:03:13Z","timestamp":1789596193263,"version":"build-2803163510"},"reference-count":51,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2025,6,2]],"date-time":"2025-06-02T00:00:00Z","timestamp":1748822400000},"content-version":"vor","delay-in-days":1,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000897","name":"Cystic Fibrosis Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000897","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2025,6]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Engaging patients and family members in healthcare quality improvement (QI) is essential to meet the needs of those who receive care. The objective of this study was to describe the experience of patient\/family partners (PFPs) in a national QI collaborative and to develop recommendations for best practices for patient engagement.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We conducted focus groups with PFPs in a national QI collaborative focused on improving transitions of care between cystic fibrosis (CF) and lung transplant programmes. Audio recordings were transcribed verbatim, coded inductively and analysed through thematic analysis. Member checking with PFPs, clinicians and team coaches was used to refine the findings and develop recommendations.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Five PFPs participated in two focus groups, which revealed that PFPs (1) were motivated to participate as members of the QI team because they felt deeply connected to their CF care teams and wanted to help other patients, (2) felt engaged in the QI collaborative and appreciated the sense of community, support from the team coach and the opportunity to take ownership of projects, and (3) suggested improvements related to timing of meetings, compensation, being mindful when discussing sensitive information and setting clear expectations. Member checking revealed the need for equitable recruitment processes and tailoring the role to the individual participants. The findings were used to develop and change processes in the collaborative.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>The structure of the national QI collaborative supported patient\/family partnership through structured meetings and a focus on building relationships of mutual respect. The findings demonstrated the need for a more equitable recruitment process, better expectation setting and customisation of the role to the individual skills, needs and preferences of the participants.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patient or Public Contribution<\/jats:title>\n                    <jats:p>Patients and family members of people living with CF participated in this study through focus groups and member checking. One CF patient (B.D.) is a co\u2010author of this paper and contributed to data analysis, sensemaking, writing and editing.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.70312","type":"journal-article","created":{"date-parts":[[2025,6,2]],"date-time":"2025-06-02T09:04:40Z","timestamp":1748855080000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["A Qualitative Study to Improve How We Partner With Patients and Families in Healthcare Improvement Collaboratives"],"prefix":"10.1111","volume":"28","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3725-7582","authenticated-orcid":false,"given":"Cassandra B.","family":"Iroz","sequence":"first","affiliation":[{"name":"Northwestern University Feinberg School of Medicine Chicago Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9489-9675","authenticated-orcid":false,"given":"Marjorie M.","family":"Godfrey","sequence":"additional","affiliation":[{"name":"The Microsystem Academy, Lebanon, New Hampshire, USA; School of Health and Welfare J\u00f6nk\u00f6ping University J\u00f6nk\u00f6ping Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0005-3971-4590","authenticated-orcid":false,"given":"Coua","family":"Early","sequence":"additional","affiliation":[{"name":"The Microsystem Academy Lebanon New Hampshire USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brad","family":"Dell","sequence":"additional","affiliation":[{"name":"Cystic Fibrosis Patient Honolulu Hawaii USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0002-3905-7867","authenticated-orcid":false,"given":"Abigail","family":"Boyle","sequence":"additional","affiliation":[{"name":"Cystic Fibrosis Foundation Bethesda Maryland USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0009-5968-8384","authenticated-orcid":false,"given":"Erin","family":"Tallarico","sequence":"additional","affiliation":[{"name":"Cystic Fibrosis Foundation Bethesda Maryland USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9974-2017","authenticated-orcid":false,"given":"Julie E.","family":"Reed","sequence":"additional","affiliation":[{"name":"Julie Reed Consultancy Ltd; School of Health and Welfare Halmstad University Halmstad Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7757-5529","authenticated-orcid":false,"given":"Julie K.","family":"Johnson","sequence":"additional","affiliation":[{"name":"University of North Carolina at Chapel Hill, Chapel Hill, North Carolina USA; Northwestern University Feinberg School of Medicine Chicago Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,6,2]]},"reference":[{"key":"e_1_2_16_2_1","doi-asserted-by":"publisher","DOI":"10.1377\/hlthaff.2012.1133"},{"key":"e_1_2_16_3_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12325-016-0364-z"},{"key":"e_1_2_16_4_1","doi-asserted-by":"publisher","DOI":"10.11124\/jbisrir-2015-1452"},{"key":"e_1_2_16_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.12633"},{"key":"e_1_2_16_6_1","doi-asserted-by":"publisher","DOI":"10.35680\/2372-0247.1064"},{"key":"e_1_2_16_7_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjqs-2020-012729"},{"key":"e_1_2_16_8_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2017-018263"},{"key":"e_1_2_16_9_1","doi-asserted-by":"publisher","DOI":"10.1136\/thoraxjnl-2017-210473"},{"key":"e_1_2_16_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2016.11.002"},{"key":"e_1_2_16_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2021.12.008"},{"key":"e_1_2_16_12_1","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyg.2022.937189"},{"key":"e_1_2_16_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2020.03.009"},{"key":"e_1_2_16_14_1","doi-asserted-by":"publisher","DOI":"10.2147\/PPA.S389792"},{"key":"e_1_2_16_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2020.12.021"},{"key":"e_1_2_16_16_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-022-02204-0"},{"key":"e_1_2_16_17_1","doi-asserted-by":"publisher","DOI":"10.2196\/17875"},{"key":"e_1_2_16_18_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2015-1784"},{"key":"e_1_2_16_19_1","doi-asserted-by":"publisher","DOI":"10.1086\/676882"},{"key":"e_1_2_16_20_1","doi-asserted-by":"publisher","DOI":"10.1053\/j.gastro.2017.12.012"},{"key":"e_1_2_16_21_1","doi-asserted-by":"publisher","DOI":"10.1111\/ctr.14038"},{"key":"e_1_2_16_22_1","unstructured":"Clinical Care Guidelines Cystic Fibrosis Foundation accessed November 1 2024 https:\/\/www.cff.org\/medical-professionals\/clinical-care-guidelines."},{"key":"e_1_2_16_23_1","doi-asserted-by":"publisher","DOI":"10.1002\/lrh2.10354"},{"key":"e_1_2_16_24_1","unstructured":"Our History Cystic Fibrosis Foundation About Us Web Site accessed December 1 2024 https:\/\/www.cff.org\/about-us\/our-history."},{"key":"e_1_2_16_25_1","doi-asserted-by":"publisher","DOI":"10.1177\/23743735211014049"},{"key":"e_1_2_16_26_1","unstructured":"Community Voice Cystic Fibrosis Foundation accessed November 6 2024 https:\/\/www.cff.org\/get-involved\/community-voice."},{"key":"e_1_2_16_27_1","volume-title":"Community Voice Brings Your Voice Into Everything That We Do","author":"Roman C.","year":"2017"},{"key":"e_1_2_16_28_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2019.03.002"},{"key":"e_1_2_16_29_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjqs-2014-002804"},{"key":"e_1_2_16_30_1","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzm042"},{"key":"e_1_2_16_31_1","volume-title":"Improvement Capability at the Front Lines of Healthcare: Helping Through Leading and Coaching","author":"Godfrey M. M.","year":"2013"},{"key":"e_1_2_16_32_1","volume-title":"Quality by Design: A Clinical Microsystems Approach","author":"Nelson E. C.","year":"2011"},{"key":"e_1_2_16_33_1","volume-title":"30 Essential Skills for the Qualitative Researcher","author":"Creswell J. W.","year":"2021"},{"key":"e_1_2_16_34_1","unstructured":"P.\u2010E.Ellstr\u00f6m Knowledge Creation Through Interactive Research: A Learning Perspective paper presented at HHS\u201007 Conference J\u00f6nk\u00f6ping University May 2007."},{"key":"e_1_2_16_35_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2023.04.015"},{"key":"e_1_2_16_36_1","unstructured":"Previous Community Conferences Cystic Fibrosis Foundation accessed February 27 2025 https:\/\/www.cff.org\/get-involved\/previous-community-conferences."},{"key":"e_1_2_16_37_1","unstructured":"Microsystems at a Glance The Microsystem Academy accessed February 4 2024 https:\/\/clinicalmicrosystem.org\/uploads\/Microsystems-at-a-Glance-updated-7.5.23_2023-07-26-170404_lorx.pdf."},{"key":"e_1_2_16_38_1","doi-asserted-by":"publisher","DOI":"10.2196\/24302"},{"key":"e_1_2_16_39_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcjq.2017.09.006"},{"key":"e_1_2_16_40_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjoq-2024-002860"},{"key":"e_1_2_16_41_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12144-023-05359-6"},{"key":"e_1_2_16_42_1","unstructured":"Patient\u2010Centered Outcomes Research Training Manual: Helping Researchers Initiate and Maintain Patient\u2010Engaged Research Teams Cystic Fibrosis Foundation accessed November 11 2024 https:\/\/www.cff.org\/sites\/default\/files\/2022-01\/PCOR-Training-Manual.pdf."},{"key":"e_1_2_16_43_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pbio.2001403"},{"key":"e_1_2_16_44_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjqs-2015-004839"},{"key":"e_1_2_16_45_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.12039"},{"key":"e_1_2_16_46_1","doi-asserted-by":"publisher","DOI":"10.1177\/2374373520925268"},{"key":"e_1_2_16_47_1","doi-asserted-by":"publisher","DOI":"10.1093\/fampra\/cmw097"},{"key":"e_1_2_16_48_1","doi-asserted-by":"publisher","DOI":"10.35680\/2372-0247.1334"},{"key":"e_1_2_16_49_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.13970"},{"key":"e_1_2_16_50_1","doi-asserted-by":"publisher","DOI":"10.2519\/jospt.2020.0106"},{"key":"e_1_2_16_51_1","doi-asserted-by":"publisher","DOI":"10.1080\/14719037.2014.881535"},{"key":"e_1_2_16_52_1","doi-asserted-by":"publisher","DOI":"10.1080\/136455700405172"}],"container-title":["Health Expectations"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hex.70312","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,11,14]],"date-time":"2025-11-14T09:46:24Z","timestamp":1763113584000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hex.70312"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,6]]},"references-count":51,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2025,6]]}},"alternative-id":["10.1111\/hex.70312"],"URL":"https:\/\/doi.org\/10.1111\/hex.70312","archive":["Portico"],"relation":{},"ISSN":["1369-6513","1369-7625"],"issn-type":[{"value":"1369-6513","type":"print"},{"value":"1369-7625","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,6]]},"assertion":[{"value":"2025-03-25","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-05-14","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-06-02","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e70312"}}