Exploring Meaningful Patient Engagement in ADAPTABLE (Aspirin Dosing: A Patient-centric Trial Assessing Benefits and Long-term Effectiveness)
| Autor: | Madelaine Faulkner, Mark J. Pletcher, W. Schuyler Jones, Ty Rorick, Jacqueline Alikhaani, Linda Brown, Ken Gregoire, Lisa G. Berdan, Henry Cruz, Desiree Davidson |
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| Rok vydání: | 2018 |
| Předmět: |
patient-centered Review Board
Adaptors Clinical Trials and Supportive Activities MEDLINE Patient engagement 030204 cardiovascular system & hematology 03 medical and health sciences 0302 clinical medicine Nursing Clinical Research Patient-Centered Care Medicine Humans Relevance (information retrieval) 030212 general & internal medicine Dosing Cooperative Behavior Pediatric Aspirin patient engagement business.industry Corporate governance Public Health Environmental and Occupational Health ADAPTABLE Term (time) Clinical trial Patient Outcome Assessment Clinical research Good Health and Well Being Applied Economics Public Health and Health Services Health Policy & Services Patient Safety Patient Participation business Platelet Aggregation Inhibitors |
| Zdroj: | Medical care, vol 56 Suppl 10 Suppl 1, iss 10 Suppl 1 Medical care, vol 56 Suppl 10 Suppl 1, iss 10 |
| Popis: | BackgroundGenuine patient engagement can improve research relevance, impact and is required for studies using the National Patient-Centered Clinical Research Network including major multicenter research projects. It is unclear, however, how best to integrate patients into governance of such projects.MethodsADAPTABLE (Aspirin Dosing: A Patient-centric Trial Assessing Benefits and Long-term Effectiveness) is the first major multicenter research project to be conducted in National Patient-Centered Clinical Research Network. Here, we provide a description of how we implemented patient engagement in ADAPTABLE thus far, including a description of committee structures and composition, first-hand patient testimonials, specific contributions, and lessons learned during the planning and early implementation of ADAPTABLE.ResultsWe recruited 1 patient leader from 6 of the 7 enrolling networks to serve on a Patient Review Board for ADAPTABLE, supported the Board with an experienced patient engagement team including an "investigator-advocate" not otherwise involved in the trial, and facilitated bidirectional communication between the Board and ADAPTABLE Coordinating Center. The Board has reviewed and provided substantial input on the informed consent procedure, recruitment materials, patient portal design, and study policy including compensation of participants. Although it was "too late" for some suggested modifications, most modifications suggested by the patient leaders have been implemented, and they are enthusiastic about the study and their role. The patient leaders also attend Steering and Executive Committee calls; these experiences have been somewhat less productive.ConclusionsWith adequate support, a cadre of committed patient leaders can provide substantial value to design and implementation of a major multicenter clinical trial. |
| Databáze: | OpenAIRE |
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