Healthcare research is evolving to include more voices, but a new study by Flinders University highlights a critical gap: the lack of formal recognition for contributors with lived experience.
Published in the journal Patient Education and Counselling, the study calls for changes to credit these invaluable contributors properly.
It highlights the importance of recognising the value of people with lived experience and increasing the visibility of their contributions.
“With the growing awareness of the importance of diversity and inclusion in research, it is time for the research community to monitor not only how often, but also how well people with lived experience are involved,” Associate Professor Elizabeth Lynch, from the College of Nursing and Health Sciences said.
“Academics, patients and advocates with lived experience are pivotal in shaping the future of medical studies; however, the current lack of visibility and recognition means their roles are often diminished or hidden within the fine print of academic papers and conference presentations.
“This lack of visibility raises questions about how effectively these valuable contributions are communicated to casual readers and the research community at large.
“In order to promote more collaborative research, we need to normalise the inclusion of lived experience by putting processes in place to acknowledge and support the vital contributions they have in shaping and implementing research initiatives.”
The study surveyed more than 70 academics and individuals with lived experience, revealing almost 64% wanted their input publicly recognised.
Nearly 28% expressed reservations, often due to stigma associated with conditions such as mental health and HIV.
The study also explored the preferred terms and titles that would be attributed to contributors such as ‘lived experience expert’ or ‘consumer’.
The term “person with lived experience” emerged as the most favoured, with more than 70% preferring it over alternatives like “consumer” or “lived experience expert”.
The study’s findings build on previous research indicating that while academics express a desire to collaborate with people with lived experiences, the actual collaborative efforts are often limited to consultation during the planning stages rather than being woven throughout the research process.
Associate Professor Lynch says that as more people with lived experiences take on collaborative roles and meet authorship criteria in health-related research, she would like to see improved practices that recognise co-authors’ experiences adequately.
“To cultivate a future where research is not just conducted on people, but with them, systemic change is imperative,” she said.
“Universities and funding bodies need to reconsider their engagement practices to create an authentic collaboration that truly reflects the diverse tapestry of human experience.
“By employing consistent reporting methods guided by those with lived experience, the research community could enhance awareness of this essential stakeholder group.”
For pharmacy assistants, this research underscores the importance of advocating for patient voices within healthcare.
By supporting inclusive practices and advocating for patient voices to be heard, community pharmacy can help drive better patient outcomes and ensure that the perspectives of those most affected by various health issues aren’t overlooked.
