{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,17]],"date-time":"2025-12-17T17:19:26Z","timestamp":1765991966843,"version":"3.48.0"},"reference-count":43,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2025,8,22]],"date-time":"2025-08-22T00:00:00Z","timestamp":1755820800000},"content-version":"vor","delay-in-days":21,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2025,8]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>The involvement of people with lived experience (PLEX) of spinal cord injury (SCI) is not common during medical innovation design, research and commercialization processes. To address the SCI community's needs and priorities, companies developing SCI\u2010related innovations must include individuals living with SCI in all steps of the process. This study explores the importance of the involvement of PLEX groups in identifying key themes and priorities for SCI\u2010related devices and therapeutics.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Focus groups were held virtually as part of the Praxis Innovation Program. Members of the Praxis PLEX team facilitated 90\u2010min discussions with PLEX participants. A discussion guide was used which included the following topics: existing challenges &amp; solutions, initial product impressions, likelihood of use, acceptance by SCI community, reimbursement\/payment challenges &amp; solutions, and potential improvements. Researchers observed the focus groups and took contemporaneous notes. Following each focus group, a deidentified summary was synthesized using researchers' notes, facilitator's key messages, and an audio transcript. The summaries from all focus groups were analyzed and themes common across the focus groups were identified.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Twenty\u2010seven focus groups were conducted between 2020 and 2023, with an average of seven participants per session. Individuals from Canada, the United States, New Zealand, and Australia participated. Participants ranged in age from 21 to 73 years. 58% were male and 42% were female. Fourteen percent of participants had lived with SCI for less than 5 years, 17% for 6\u201310 years, 12% for 11\u201315 years, and 57% for greater than 16 years. Among participants, 59% were tetraplegic, while 41% were paraplegic. Six global themes emerged that reflected PLEX's considerations for new technologies; purchase and use decisions were identified in 96% of the focus groups, purpose in 93%, design in 89%, communication in 85%, time factors in 81%, and adaptation considerations in 81%.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>This study describes the results of using a systematic approach and framework for SCI PLEX focus groups during the research, design and commercialization process. The themes identified: purchase and use decisions, purpose, design, communication, time factors, and adaptation considerations, are important topics regarding SCI innovations. Future studies should focus on measuring the impact of patient\/PLEX engagement by comparing the success of devices that successfully reach consumer market after collaboration with PLEX versus products that are developed independently.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>PLEX and or Public Contribution<\/jats:title>\n                    <jats:p>Members of the Praxis PLEX team provided significant feedback and input on developing the focus group discussion guides, facilitating the focus groups, interpreting the data, and producing the manuscript. They\u00a0were all included as co\u2010authors.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.70369","type":"journal-article","created":{"date-parts":[[2025,8,22]],"date-time":"2025-08-22T22:40:22Z","timestamp":1755902422000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Engagement of People With Lived Experience in Spinal Cord Injury to Address Innovation Priorities"],"prefix":"10.1111","volume":"28","author":[{"ORCID":"https:\/\/orcid.org\/0009-0007-9002-8478","authenticated-orcid":false,"given":"Julia T.","family":"Ross","sequence":"first","affiliation":[{"name":"Praxis Spinal Cord Institute 6400\u2010818W 10th Ave Vancouver British Columbia Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3226-9218","authenticated-orcid":false,"given":"Vanessa K.","family":"Noonan","sequence":"additional","affiliation":[{"name":"Praxis Spinal Cord Institute 6400\u2010818W 10th Ave Vancouver British Columbia Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"John","family":"Chernesky","sequence":"additional","affiliation":[{"name":"Praxis Spinal Cord Institute 6400\u2010818W 10th Ave Vancouver British Columbia Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"James","family":"Hektner","sequence":"additional","affiliation":[{"name":"Praxis Spinal Cord Institute 6400\u2010818W 10th Ave Vancouver British Columbia Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Richard","family":"Peter","sequence":"additional","affiliation":[{"name":"Praxis Spinal Cord Institute 6400\u2010818W 10th Ave Vancouver British Columbia Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Spring","family":"Hawes","sequence":"additional","affiliation":[{"name":"Praxis Spinal Cord Institute 6400\u2010818W 10th Ave Vancouver British Columbia Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andrew","family":"Forshner","sequence":"additional","affiliation":[{"name":"Praxis Spinal Cord Institute 6400\u2010818W 10th Ave Vancouver British Columbia Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shweta","family":"Shekhar","sequence":"additional","affiliation":[{"name":"Praxis Spinal Cord Institute 6400\u2010818W 10th Ave Vancouver British Columbia Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tathagata","family":"Ray","sequence":"additional","affiliation":[{"name":"Praxis Spinal Cord Institute 6400\u2010818W 10th Ave Vancouver British Columbia Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Arushi","family":"Raina","sequence":"additional","affiliation":[{"name":"Praxis Spinal Cord Institute 6400\u2010818W 10th Ave Vancouver British Columbia Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8701-0567","authenticated-orcid":false,"given":"James J.","family":"Laskin","sequence":"additional","affiliation":[{"name":"Praxis Spinal Cord Institute 6400\u2010818W 10th Ave Vancouver British Columbia Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2025,8,22]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1080\/10790268.2017.1329076"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.3389\/fneur.2019.00282"},{"key":"e_1_2_12_4_1","unstructured":"World Health Organization. Spinal Cord Injury accessed July 20 2024 https:\/\/www.who.int\/news-room\/fact-sheets\/detail\/spinal-cord-injury."},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1097\/BRS.0000000000004417"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.3389\/fneur.2023.1201025"},{"key":"e_1_2_12_7_1","unstructured":"World Health Organization. International Classification of Functioning Disability and Health (ICF) accessed February 20 2025 https:\/\/www.who.int\/standards\/classifications\/international-classification-of-functioning-disability-and-health."},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1089\/neu.2004.21.1371"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.1089\/neu.2011.2226"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2020.01.019"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0301626"},{"key":"e_1_2_12_12_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41393-023-00926-x"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.apmr.2022.04.010"},{"key":"e_1_2_12_14_1","unstructured":"European Network of Open Living Labs. Living Labs \u2010 ENoLL accessed February 18 2025 https:\/\/enoll.org\/living-labs\/#living-labs."},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2021-058630"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.3389\/frhs.2023.1124290"},{"key":"e_1_2_12_17_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.apmr.2020.09.393"},{"issue":"1","key":"e_1_2_12_18_1","first-page":"11","article-title":"Honorarium or Coercion: Use of Incentives for Participants in Clinical Research","volume":"41","author":"Groth S. W.","year":"2010","journal-title":"Journal of the New York State Nurses' Association"},{"key":"e_1_2_12_19_1","doi-asserted-by":"publisher","DOI":"10.11648\/j.ajtas.20160501.11"},{"key":"e_1_2_12_20_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12984-023-01194-9"},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.1080\/17483107.2018.1425748"},{"key":"e_1_2_12_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.healthpol.2021.09.014"},{"key":"e_1_2_12_23_1","doi-asserted-by":"publisher","DOI":"10.1080\/10400435.2021.1974979"},{"key":"e_1_2_12_24_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41598-024-59862-2"},{"key":"e_1_2_12_25_1","doi-asserted-by":"publisher","DOI":"10.3390\/healthcare11111646"},{"key":"e_1_2_12_26_1","doi-asserted-by":"publisher","DOI":"10.1179\/2045772314Y.0000000194"},{"key":"e_1_2_12_27_1","doi-asserted-by":"publisher","DOI":"10.1080\/10790268.2008.11760741"},{"key":"e_1_2_12_28_1","doi-asserted-by":"publisher","DOI":"10.1080\/17483107.2020.1768308"},{"key":"e_1_2_12_29_1","unstructured":"C.KentEquipment Aesthetics: The Companies Improving Mobility Aid Design. Medical Device Network accessed June 03 2024 https:\/\/www.medicaldevice-network.com\/features\/assistive-device-design."},{"key":"e_1_2_12_30_1","unstructured":"Skin. Spinal Injuries Association accessed May 6 2024 https:\/\/spinal.co.uk\/get-support-body-matters-skin\/."},{"key":"e_1_2_12_31_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2017-017860"},{"key":"e_1_2_12_32_1","doi-asserted-by":"publisher","DOI":"10.1177\/1359105313512351"},{"key":"e_1_2_12_33_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12912-021-00684-2"},{"key":"e_1_2_12_34_1","doi-asserted-by":"publisher","DOI":"10.2147\/PRBM.S259712"},{"key":"e_1_2_12_35_1","doi-asserted-by":"publisher","DOI":"10.1055\/s-0034-1383904"},{"key":"e_1_2_12_36_1","doi-asserted-by":"publisher","DOI":"10.3389\/fresc.2022.872782"},{"key":"e_1_2_12_37_1","doi-asserted-by":"publisher","DOI":"10.1080\/09638280701355777"},{"key":"e_1_2_12_38_1","doi-asserted-by":"publisher","DOI":"10.1080\/10400435.1999.10131984"},{"key":"e_1_2_12_39_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41393-021-00743-0"},{"key":"e_1_2_12_40_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2021-055428"},{"key":"e_1_2_12_41_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.13437"},{"key":"e_1_2_12_42_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12961-019-0521-3"},{"key":"e_1_2_12_43_1","doi-asserted-by":"publisher","DOI":"10.5437\/08956308X560310"},{"key":"e_1_2_12_44_1","doi-asserted-by":"publisher","DOI":"10.1177\/23743735221125439"}],"container-title":["Health Expectations"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hex.70369","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,17]],"date-time":"2025-12-17T17:08:30Z","timestamp":1765991310000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hex.70369"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,8]]},"references-count":43,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2025,8]]}},"alternative-id":["10.1111\/hex.70369"],"URL":"https:\/\/doi.org\/10.1111\/hex.70369","archive":["Portico"],"relation":{},"ISSN":["1369-6513","1369-7625"],"issn-type":[{"type":"print","value":"1369-6513"},{"type":"electronic","value":"1369-7625"}],"subject":[],"published":{"date-parts":[[2025,8]]},"assertion":[{"value":"2024-11-28","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-07-08","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-08-22","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e70369"}}