Short summary

We want to engage patients and their relatives in a systematic process to identify and prioritize research questions related to the medical treatment of older people with an overarching aim of strengthening the patients' voice in research on medication use among older people. Use of medication is both high and increasing in this group of patients. Understanding patients' perspectives on using and stopping medications is crucial to ensure appropriate medication use.

Rationale

There are several potential problems related to the high and increasing use of medication among older people, including lack of evidence for medication use in this age group and high susceptibility towards potential adverse drug events among older individuals. A myriad of studies have aimed to optimize medication use among older people, either by testing interventions or by targeting specific medication classes. However, while most studies have used medication- and process-related outcomes, few studies have used clinical and patient-important outcomes, such as quality of life or risk of falls. In recent years, there has been an increased focus on improving our understanding of patients' perspectives on using and stopping medications. As with most applied health research, however, the selection of which research questions are addressed and investigated have largely been driven by researchers. Our perceived priorities may not be the same as those of the patients and their relatives. This highlights an urgent need to ensure a better understanding of the perspective of the end users, i.e., older medication users and their relatives, to avoid research that will not inform real-world decisions and are wasteful of scarce resources. The James Lind Alliance (JLA), a UK-based non-profit organisation, has built a strong track record of involving patients, relatives, and clinicians in a systematic process to identify and prioritize research hypotheses related to a specific health condition and uncertainties about the effects of treatment [29]. The JLA method is designed to change the way research funding is granted and to raise awareness of research questions, which are of direct relevance and potential benefit to patients and the clinicians who treat them. To address research questions of direct relevance and potential benefit to older people on multiple medications, their relatives, and the treating clinicians, we will initiate the Medical Treatment for Older People Priority Setting Partnership (from now on referred to as the JLA process). The scope of this JLA process will aim to identify and prioritize uncertainties related to the medical treatment of older people.

Description of the cohort

We will invite people aged ≥65, relatives, clinicians, lay responders, and other stakeholders, including researchers, to participate in an online survey to gather evidence uncertainties. Invitations will be sent through emails, newsletters, advertisements to relevant health professional associations, and patient and family support groups and associations (e.g., Danske Patienter, Bedre Psykiatri, Ældre Sagen). The link will also be posted on social media. To ensure participation from groups of frail older people, such as nursing home residents, we will meet with these groups in person to assist them in completing the survey. The JLA process will be restricted to Denmark.

Data and biological material

A few demographic data will be collected about the respondents.

Collaborating researchers and departments

Odense Deprescribing INitiative (ODIN)

Center for Research in Partnership with Patients and Relatives