Monash University established the Consumer and Researcher Engagement program (CaRE) to facilitate mutually beneficial and meaningful connections between researchers and community members with lived experience as a patient or carer of the medical conditions being studied at the Central Clinical School (CCS)
CaRE is a planned process covering a broad range of interactions with the specific purpose of informing, consulting, partnering, and empowering community members to contribute to medical research through a number of approaches.
More specifically, community members provide personal insights about medical conditions which can ensure the research being undertaken is appropriate, accessible, relevant and has the greatest impact on both patients and the wider community.
And for community members themselves, CaRE gives the chance to take part in significant research, something they wouldn’t have been expecting from their condition (or from caring for someone with it). It gives them the chance to meet and talk to others with the same condition, gaining an understanding of how others manage.
The value of community members in medical research can be seen in the following example where CCS medical researcher Dr Lucy Vivash consulted community members with lived experience of epilepsy.
Community-Driven Research: Unleashing the Power of Collective Knowledge for Real-World Impact
Traditionally, epilepsy clinical trials have focussed on reducing seizure frequency, however for patients with epilepsy this is just one factor to consider. There is also quality of life, medication cost and potential negative physical and mental side-effects. But these additional factors haven’t previously been formally incorporated into a study.
CCS medical researcher Dr Lucy Vivash consulted community members with lived epilepsy experience to help review the Desirability of Outcome Ranking (DOOR) tool, ahead of its implementation in an upcoming epilepsy drug clinical trial. The focus group purpose was to reconsider how outcomes measured and assessed in people with epilepsy throughout clinical trials. Dr Vivash collected survey responses and facilitated a workshop where she sought input on the DOOR tool. This tool combines aspects of benefit and harm experienced by patients following the introduction of a new treatment, thus allowing each patient to be assessed in their own right over time. Study outcomes are concluded based on the overall benefits and harms for each individual patient.
The epilepsy focus group considered how this DOOR method could be adapted to account for all the factors patients consider when deciding to try a new treatment. They identified and prioritised the top three outcomes most important to be incorporated into the new epilepsy-DOOR, which are: 1. seizure frequency, 2. adverse events (e.g. unintended side effects of the new medication including dizziness, headaches, nausea and visual hallucinations), and 3. quality of life measures.
By combining and incorporating these measures, the adjusted DOOR tool now adopts a more holistic view of patient medication experiences, meaning that the total impact of the treatment is considered, not just single outcomes, such as a reduction in seizures, in isolation.
Dr Vivash could not have achieved this progress without the insightful contributions from community members with epilepsy. Dr Vivash reported:
“Originally, we weren’t including a quality of life measure, but measuring changes in mood. During the group discussion it became pretty clear that quality of life was of great importance to the group. We wouldn’t have made the change if it hadn’t been for the community feedback”.
This adapted DOOR method will now be put into practice in a Monash University sodium selenate clinical trial commencing late 2023, investigating the drug as a potential epilepsy treatment. All three outcomes identified by community members will be measured across the full duration of the study, providing a broader view of whether the treatment has an overall positive or negative effect on patients.
A healthy group discussion took place among the community members with a lot of respect shown for each other's different epilepsy experience, and there was a definite feeling of being part of something significant.
This feeling was only reinforced in March 2023 when the study was featured on the front page of Melbourne’s Herald Sun and on television news.
For community members who take part in the CaRE program, it’s also an opportunity to learn more about the research process, and how treatments and cures are developed. It can also help build a greater understanding of the diseases and illnesses that are being studied.
More researchers are including community members in their studies, however there is still room for more community member involvement.
Find out more about the trial.
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