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

Empowering people living with dementia to be active partners in conversations about their medicines is imperative. Consumers, people living with dementia and their carers, have reported limited confidence to start conversations with their healthcare professional (HCP) about deprescribing, reducing or stopping, their medicines.1 Co-design is the process of co-producing an output by engaging end users throughout the entire project.2 To co-design impactful, usable, healthcare tools with real-world relevance, key stakeholders should be engaged in the research, not just as participants but as true partners. To our knowledge, deprescribing tools that are co-designed with consumers to meet their individual preferences and beliefs, are currently unavailable in the public domain.3 Form stakeholder group (SG) We conducted the following meetings to date: Future meetings include: We gathered input from SG members to select key elements to include and refined them to create a PRIME tool draft ready for further testing. Examples of key feedback that we incorporated included: Cultural and language differences were noted between the US and Australia. For example, in Australia the term “carers” is used and in the US “caregivers” is used. Additionally, the scope of practice of specific HCPs (e.g., nurse practitioners) may differ depending on the country and the healthcare setting. We are considering these differences as we finalise the PRIME tool. Overall, the discussion between SG members was rich. Some members had opposing views which created a range of possible options. For example, there was discussion about whether to create tailored versions of the PRIME tool for subgroups in the future (e.g., people living with dementia and carers separately; various healthcare settings). Conduct SG meetings Co-design the tool As a research team, we collated a list of potential key elements to include in the PRIME tool based on existing literature.1 During Meeting #2, SG members broke off into smaller groups using Zoom's break-out room function to discuss the key elements. Each group was assigned a research team member to facilitate the discussion. The SG members then discussed their feedback as a whole group, which we used to create the first draft of the PRIME tool. During Meeting #3, SG members provided feedback on wording and formatting of the tool. Meeting #4 focused on reviewing a guide to test the tool's usability and comprehensibility via interviews and focus groups with people living with dementia, carers and HCPs. Meetings #5 and #6 discussed interview findings and further revisions to the tool. We also elicited feedback from our SG to co-design the design of the pilot study in Meeting #6. Our pilot study aims to test the feasibility of implementing the PRIME tool in practice. The methods and findings from our alpha-testing (interviews, focus groups) and beta-testing (pilot study) will be published separately. Overall, SG members were engaged and enjoyed the co-design process of the PRIME tool. For example, one SG member stated, “It has been an absolute delight being a part of this design consultative group.” The SG members also reported that they believed the tool would address an unmet need for resources to encourage and enable consumers to engage in medicine reviews. There was consensus amongst SG members to include three sections: (a) Background: information about reviewing medicines and medicine-related harm; (b) Self-reflection: questions from the Revised Patients' Attitude Towards Deprescribing (rPATD) questionnaire for people with mild cognitive impairment and mild-to-moderate dementia (rPATDcog),7 which invites consumers to answer how willing they are to have one or more of their medicines deprescribed if recommended by a doctor; (c) Call-to-action: example phrases to empower consumers to start deprescribing conversations. To improve the content of the tool, our SG put forward several suggestions (Table 1), which we implemented to improve the PRIME tool's usability in practice. Identifying meeting times: People living with dementia may have limited times in the day when they have more energy (e.g., in the morning or the middle of the day).8 These times often clash with HCPs' schedules who may be busiest at those times. Given this, identifying convenient times to meet was challenging. Recommendation(s): We recommend gathering individuals' preferences to meet using a Doodle poll. We offered times that are early in the morning to accommodate both consumers' and HCPs' preferences. If members were unavailable to attend the meeting, we provided them the opportunity to meet separately at a different time. Incorporating cultural and language differences: We noticed cultural and language preference differences (Table 1). Recommendation(s): We recommend taking full advantage of incorporating the SG's diverse and rich feedback by using a framework for guidance. To achieve this, we used the Comparative Effectiveness Framework to ensure the tool's relevance to an international audience. Forging connections between a new group of people: Given that our SG had a mixture of HCPs and consumers, the potential for a “power imbalance” to exist was present. Recommendation(s): We recommend working as a research team to facilitate communication between the group to hear and include every member's voice. 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 people3-6 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. We also recommend informing people, as soon as feasibly possible, when meetings would be. We aimed to have one meeting every 3–4 months to maintain engagement. We also recommend regular correspondence with SG members via email to provide updates and communicate potential delays in the progress of research plans. Considering SG members' capacity to be involved: Overtime, SG members might experience changes to their health or caring responsibilities, which impacts their involvement. Recommendation(s): We recommend employing a flexible approach by providing them the opportunity to end their involvement at any time. We also recommend collecting their feedback via practical avenues, such as e-mail correspondence. Fairly remunerating SG members: Limited guidance exists for researchers to achieve fair remuneration. Recommendation(s): We recommend checking local guidance regarding consumer renumeration. We were guided by South Australia health consumer guidelines and chose to remunerate both consumers and HCPs equally.9 We incorporated SG payment into our grant's budget to ensure the project's feasibility. Determining the size of the SG and managing the SG's diversity: It can be challenging to determine the ideal size of a SG, and appropriate diversity between SG members, for maximal knowledge exchange. 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. These strategies along with our SG members being respectful of other members' opinions, even when they differed from their own, enabled us to facilitate a rich discussion. Deciding the number of SG members and meetings needed: To ensure there is ample opportunity for all members to provide feedback, an adequate number of SG meetings is needed. This decision needs to be balanced against budget considerations and avoiding overburdening the SG. Recommendation(s): Based on previous similar research, we recommend holding between six to eight meetings whilst taking into consideration meeting research goals and budget targets. Previous research has shown that consumer engagement through the provision of health information can be a successful deprescribing strategy.11 Similarly, partnering with our SG enabled us to successfully co-design a deprescribing communication tool for people living with dementia and their carers. We will continue to work alongside our SG to complete our research program's next steps. These include feasibility and pilot testing the implementation of the PRIME tool in clinical practice followed by the pragmaticly embedding the PRIME tool in various healthcare settings. Once ready for use, we will widely disseminate the PRIME tool, in collaboration with partner organisations, so that it may reach all end-users who may benefit the most from its use. We would like to acknowledge Dementia Australia, Step Up for Dementia Research, and our stakeholder steering group members who supported this research. We would also like to acknowledge the US Deprescribing Network and the University of Washington's Plein Centre for Geriatric Pharmacy support towards this research. Open access publishing facilitated by The University of Queensland, as part of the Wiley - The University of Queensland agreement via the Council of Australian University Librarians. Dr Reeve receives honoraria for co-authoring a chapter on deprescribing in UpToDate and from the Society of Hospital Pharmacists of Australia (leading workshops on deprescribing).