Co-Creating Healthcare Communications with Patients

Background:  Co-creation is a design technique where stakeholders with diverse perspectives develop solutions together. Co-creation is increasingly popular in the business world — organizations collaborate with customers to develop new products or services that better meet the needs of end users. Since 2013, Bristol-Myers Squibb (BMS) has been co-creating with patients, caregivers, clinicians, and other experts to design patient communications. Based on lessons learned from co-creation, we have created a capability we call the Universal Patient Language, or UPL. We update the UPL based on lessons learned in new co-creation sessions with new groups of patients, caregivers, and other collaborators. In this way, the UPL is an ever-evolving resource that is “always ready, never finished.”

Program background:  In this presentation, we discuss the co-creation of a UPL version of drug safety information (DSI). Traditionally, DSI is presented as a dense, text-heavy document that patients may not find engaging to read. In our co-creation sessions on this topic, we collaborated with a variety of different stakeholders: patients, caregivers, nurses, patient advocacy group representatives, and academic experts in areas like risk communication and plain language. Through co-creation, we identified specific ways that DSI can be made more patient-friendly. For instance, we worked with patients to develop new section headings that are based on the questions they have about a drug. General UPL principles like color, formatting, and use of visuals have been applied throughout the redesigned DSI.

Evaluation Methods and Results:  Evaluation of the UPL and individual UPL communications is ongoing. To date, we have evaluated the DSI in two specific ways. First, we have conducted one-on-one qualitative interviews with patients to gauge their response to the UPL version of DSI. Patients were overwhelming receptive to the new design, and indicated they would engage with it in a very different way (“I would put it on my fridge”). Second, we conducted a small-scale online survey that included patients with a relevant diagnosis for the drug. Half of respondents received the traditional DSI, and half received the redesigned version. Respondents receiving the redesigned version consistently rated it more highly in terms of identifying information that is most relevant, and communicating the importance of following the instructions. These effects were stronger for respondents who had a relevant diagnosis. To date, the UPL version of DSI has been made publically available for two different BMS products. In both cases, the redesigned DSI was reviewed by the FDA Office of Prescription Drug Promotion prior to release.

Conclusions:  The UPL version of DSI may support higher patient engagement with drug safety information. Co-creation was critical in developing the redesigned DSI. 

Implications for research and/or practice:  The specific findings from co-creation may inform practitioners’ own risk communications with patients and caregivers. It may also provide insight on how to use co-creation in developing communications that resonate with patients, caregivers, and other stakeholders. Finally, the Universal Patient Language is an open-source resource that we are making available online for others to use. (The first version of the public site is expected to launch at upl.org in April 2016).