PARTICIPATORY DESIGN OF A PATIENT DECISION AID IN TREATMENT CHOICE FOR PERINATAL DEPRESSION

Purpose: To make use of a participatory research approach to develop a patient decision aid to increase shared decision making in treatment choices by low income women with elevated depression symptoms in pregnancy and risk of low literacy. We wished to design a system making use of communication technology which would be culturally appropriate for low income African American women and Latinas. 

Methods: A participatory design and rapid prototyping approach was used with two participatory design groups comprised of patients with history of depression in pregnancy and prenatal providers including midwives, physicians, care managers, and mental health specialists. The International Patient Decision Aids Standards (IPDAS) were used to guide development of this tool. Qualitative group interview techniques were used to elicit feedback on decision aid features.

Results: For a period of 17 months (1/2012-5/2014) these two participatory design groups reviewed potential targets and chose a hybrid patient decision aid and provider decision support model. Review of available treatments for perinatal depression identified three primary axes of selection criteria; 1) efficacy, 2) risk, and 3) ease of use. Ten treatments with a range of evidence for benefit were chosen for inclusion in the decision aid based on these criteria, the availability, and pragmatic utility of the treatments. The use of a tablet computer interface with audio and video features was identified as necessary for the decision aid. Both live acting and animated avatar video “navigators” of the tool were selected by the design team to increase the options for patients. Testing of navigator options identified video avatars as both appealing and more neutral to patients than live actors. A text messaging component was also identified as key to enhancing system reach by accommodating the communication preferences and time limitations faced by these women as well as to build connections which may be built upon in the clinical context to reduce obstacles related to distrust.   

Conclusions: We found a participatory design approach to patient decision aid development utilizing representative patient and provider end users to be efficient and effective. A novel design of the decision aid system resulted and is under development for implementation and testing. This approach should be more widely incorporated into the standard methodology for developing electronic tools for patient and provider communication.