Application of best practice approaches for designing decision support tools: The preparatory education about clinical trials (PRE-ACT) study

• Published in: Patient education and counseling 2014-07, Vol.96 (1), p.63-71
• Main Authors: Fleisher, Linda, Ruggieri, Dominique G, Miller, Suzanne M, Manne, Sharon, Albrecht, Terrance, Buzaglo, Joanne, Collins, Michael A, Katz, Michael, Kinzy, Tyler G, Liu, Tasnuva, Manning, Cheri, Charap, Ellen Specker, Millard, Jennifer, Miller, Dawn M, Poole, David, Raivitch, Stephanie, Roach, Nancy, Ross, Eric A, Meropol, Neal J
• Format: Article
• Language: English
• Subjects: Advocacy services; Benchmarking; Best practice; Cancer; Clinical trials; Clinical Trials as Topic; Decision aids; Decision Making; Decision Support Systems, Clinical - organization & administration; Decision Support Techniques; Decision support tools; Feedback; Female; Humans; Internal Medicine; Male; Neoplasms - therapy; Nursing; Patient Care Team - organization & administration; Patient Education as Topic - methods; Patient Participation - methods; Patient-Centered Care - organization & administration
• ISSN: 0738-3991; 1873-5134
• DOI: 10.1016/j.pec.2014.04.009

Abstract Objective This article describes the rigorous development process and initial feedback of the PRE-ACT (Preparatory Education About Clinical Trials) web-based- intervention designed to improve preparation for decision making in cancer clinical trials. Methods The multi-step process included stakeholder input, formative research, user testing and feedback. Diverse teams (researchers, advocates and developers) participated including content refinement, identification of actors, and development of video scripts. Patient feedback was provided in the final production period and through a vanguard group ( N = 100) from the randomized trial. Results Patients/advocates confirmed barriers to cancer clinical trial participation, including lack of awareness and knowledge, fear of side effects, logistical concerns, and mistrust. Patients indicated they liked the tool's user-friendly nature, the organized and comprehensive presentation of the subject matter, and the clarity of the videos. Conclusion The development process serves as an example of operationalizing best practice approaches and highlights the value of a multi-disciplinary team to develop a theory-based, sophisticated tool that patients found useful in their decision making process. Practice implications Best practice approaches can be addressed and are important to ensure evidence-based tools that are of value to patients and supports the usefulness of a process map in the development of e-health tools.