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103 A novel, community-engaged approach to encourage diverse patient participation in lupus clinical trials
  1. Saira Z Sheikh1,
  2. Tessa Englund1,
  3. Andrew Simkus2,
  4. Nicole Wanty2,
  5. Annie McNeill2,
  6. Kristen Holtz2,
  7. Tenesha Hood3,
  8. Starla Blanks3,
  9. Maria Allen4 and
  10. Allen Anandarajah4
  1. 1University of North Carolina at Chapel Hill, USA
  2. 2KDH Research and Communication, USA
  3. 3American College of Rheumatology, USA
  4. 4University of Rochester Medical Center, USA

Abstract

Background Efforts to encourage and increase diverse patient participation in lupus clinical trials (LCTs) require novel approaches to address complex patient and provider level barriers. To address these unmet needs, the American College of Rheumatology (ACR) developed the Training to Increase Minority Enrollment in Lupus Clinical Trials with CommunitY Engagement (TIMELY) program. TIMELY seeks to engage and improve how healthcare providers (providers) and community health workers (CHWs) discuss LCTs with diverse patients living with lupus. The TIMELY program uses a two-stage approach to engage providers and CHWs.

Providers and CHWs received access to tailored online education, followed by interactive roundtable discussions that include the principal investigators of the project and their research teams. In addition to discussing diverse patient participation in LCTs, the roundtables seek to connect interdisciplinary providers with each other and CHWs with providers. Engaged, connected providers and CHWs can then bridge the gap between traditional clinical care and community-based health resources to overcome patient and provider level barriers to diverse patient participation in LCTs.

Methods The TIMELY program was implemented with providers and CHWs in congruent geographic areas, New York and North Carolina, to address both provider and patient level barriers to LCT participation. Provider and CHW participants, in tandem, completed an online education (providers – The ACR’s Materials to Increase Minority Involvement in Clinical Trials (MIMICT) continuing medical education (CME) course; CHWs – the CHW Lupus Clinical Trials Training (LuCTT) program) and participated in roundtable discussions. We analyzed site- level roundtable reports and providers’ and CHWs’ post-roundtable open-ended responses to assess the extent to which the TIMELY roundtable approach engages and connects providers and CHWs.

Conclusion Overall, providers and CHWs demonstrated high engagement and connection during the roundtables. The provider roundtables included dermatologists, nephrologists, rheumatologists, and primary care providers. The CHW roundtables included CHWs from both New York and North Carolina. The small group and more informal nature of the roundtables created a setting in which providers and CHWs were able to meet, engage in discussion with, and connect with each other. Indeed, one provider noted, ‘I like the variety of interdisciplinary teams that were involved and being able to place faces with names. Now that I have met other specialists, I’m more prone to reach out when I have questions.’ Similarly, a CHW shared, ‘It was informative and [I] also like that it was participants from other states involved and that health care professionals were involved.’ TIMELY-trained providers and CHWs are currently utilizing knowledge and connections made to address barriers to LCT participation among diverse patients in their communities.

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This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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