Abstract
BackgroundOver 100 trials show that patient decision aids effectively improve patients’ information comprehension and values-based decision making. However, gaps remain in our understanding of several fundamental and applied questions, particularly related to the design of interactive, personalized decision aids. This paper describes an interdisciplinary development process for, and early field testing of, a web-based patient decision support research platform, or virtual decision lab, to address these questions.MethodsAn interdisciplinary stakeholder panel designed the web-based research platform with three components: a) an introduction to shared decision making, b) a web-based patient decision aid, and c) interactive data collection items. Iterative focus groups provided feedback on paper drafts and online prototypes. A field test assessed a) feasibility for using the research platform, in terms of recruitment, usage, and acceptability; and b) feasibility of using the web-based decision aid component, compared to performance of a videobooklet decision aid in clinical care.ResultsThis interdisciplinary, theory-based, patient-centered design approach produced a prototype for field-testing in six months. Participants (n = 126) reported that: the decision aid component was easy to use (98%), information was clear (90%), the length was appropriate (100%), it was appropriately detailed (90%), and it held their interest (97%). They spent a mean of 36 minutes using the decision aid and 100% preferred using their home/library computer. Participants scored a mean of 75% correct on the Decision Quality, Knowledge Subscale, and 74 out of 100 on the Preparation for Decision Making Scale. Completing the web-based decision aid reduced mean Decisional Conflict scores from 31.1 to 19.5 (p < 0.01).ConclusionsCombining decision science and health informatics approaches facilitated rapid development of a web-based patient decision support research platform that was feasible for use in research studies in terms of recruitment, acceptability, and usage. Within this platform, the web-based decision aid component performed comparably with the videobooklet decision aid used in clinical practice. Future studies may use this interactive research platform to study patients’ decision making processes in real-time, explore interdisciplinary approaches to designing web-based decision aids, and test strategies for tailoring decision support to meet patients’ needs and preferences.
Highlights
IntroductionIntroduction and baseline data collectionThe website opened with a welcome and log-on page inviting eligible patients to re-review the informed consent documentation, and to confirm consent by entering their study password
Introduction and baseline data collectionThe website opened with a welcome and log-on page inviting eligible patients to re-review the informed consent documentation, and to confirm consent by entering their study password
Development To ensure that our design process addressed multiple users? needs, we formed a stakeholder advisory panel consisting of four patients, two clinicians, two decision scientists, two decision counselors, and two health informaticians
Summary
Introduction and baseline data collectionThe website opened with a welcome and log-on page inviting eligible patients to re-review the informed consent documentation, and to confirm consent by entering their study password. In the Introduction, a narrator described how this health care decision has multiple treatment options, and discussed how patients can, if they choose, share in the decision-making process with their doctor(s). S review of 115 trials reported that patients who used decision aids had improved knowledge of the options, more realistic expectations of potential benefits/harms, and greater clarity about what matters most to them [1] They were more likely to participate in decision making, and to report improved communication with their doctors. When patients are using a decision aid, delivered online, to deliberate about a tough health care decision, do monitoring and blunting coping styles persist for both information seeking and the level of engagement in active deliberation? When patients are using a decision aid, delivered online, to deliberate about a tough health care decision, do monitoring and blunting coping styles persist for both information seeking and the level of engagement in active deliberation? Are there groups of patients who seek detailed risk/benefit information (e.g., ? monitors? [11]) and benefit from explicit, step-wise deliberative guidance, while other groups favor a gestalt-like overview of the key facts (e.g., ? blunters? ) and benefit more from implicit guidance? [12,13] Would such ? deliberative styles? tend to be trait-like, in that patients use the same deliberative style across a wide range of preventive, screening, acute-, and chronic-care health decisions? Or are these styles state-like, in that patients use different deliberative styles in accordance with what? s at stake in a particular health decision? For patients with chronic conditions, do their deliberative styles change over time as they gain decision-making skills? does the match/mismatch between the patients? deliberative style and the type of decision aid they receive affect their information comprehension, decisional conflict, or decision quality?
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