Consumer and Healthcare Professional Led Priority Setting for Quality Use of Medicines in People with Dementia: Gathering Unanswered Research Questions

Abstract

Background: Historically, research questions have been posed by the pharmaceutical industry or researchers, with little involvement of consumers and healthcare professionals. Objective: To determine what questions about medicine use are important to people living with dementia and their care team and whether they have been previously answered by research. Methods: The James Lind Alliance Priority Setting Partnership process was followed. A national Australian qualitative survey on medicine use in people living with dementia was conducted with consumers (people living with dementia and their carers including family,and friends) and healthcare professionals. Survey findings were supplemented with key informant interviews and relevant published documents (identified by the research team). Conventional content analysis was used to generate summary questions. Finally, evidence checking was conducted to determine if the summary questions were ‘unanswered’. Results: A total of 545 questions were submitted by 228 survey participants (151 consumers and 77 healthcare professionals). Eight interviews were conducted with key informants and four relevant published documents were identified and reviewed. Overall, analysis resulted in 68 research questions, grouped into 13 themes. Themes with the greatest number of questions were related to co-morbidities, adverse drug reactions, treatment of dementia, and polypharmacy. Evidence checking resulted in 67 unanswered questions. Conclusion: A wide variety of unanswered research questions were identified. Addressing unanswered research questions identified by consumers and healthcare professionals through this process will ensure that areas of priority are targeted in future research to achieve optimal health outcomes through quality use of medicines.

Partnering with a stakeholder steering group to co‐design the PRIME deprescribing conversation tool: Reflections and recommendations

“…Recommendation(s) : We recommend leaning on similar co‐design research to guide the size of your SG for effective engagement 6,10 . Taking this into consideration, we aimed to invite up to 12 members in total, the majority of whom are people with lived experiences with dementia and some HCPs.…”

“…Altogether, our research team's expertise and our HCP SG members enabled us to capture an interdisciplinary perspective of using the PRIME tool in practice. We used the Comparative Effectiveness Research framework and leaned on our previous co-design research experience 6 to invite our SG. Specifically, we employed two approaches:…”

“…We used the Comparative Effectiveness Research framework and leaned on our previous co‐design research experience 6 to invite our SG. Specifically, we employed two approaches: We leveraged existing relationships with local hospital networks, and personal contacts to identify suitable HCPs and consumers. We approached a consumer representative liaison at Dementia Australia, a peak consumer organisation in Australia, to identify and build new relationships with consumers.…”

“…We also recommend orientating the members in the first meeting by facilitating introductions of SG members, explaining co‐design concepts, familiarising members with the project and encouraging their feedback. We also recommend using break‐out rooms with a small number of people 3–6 to allow people to get comfortable with other members. These recommendations along with maintaining values such as respect and transparency translated into members' comfort to speak up even within the larger group. Engaging the SG : Maintaining interest and engagement of the SG over an extended period (1–2 years) of research is challenging. Recommendation(s) : We recommend transparently providing SG members with an upfront timeline.…”

“…Recommendation(s): We recommend leaning on similar co-design research to guide the size of your SG for effective engagement. 6,10 Taking this into consideration, we aimed to invite up to 12 members in total, the majority of whom are people with lived experiences with dementia and some HCPs. To bridge members' variability of health information and experiences, we recommend developing and using consumer-facing materials, such as PowerPoint presentations, to guide discussion.…”