Unmasking the voices of experience in healthcare studies

Researchers are calling for a formal process that recognises and acknowledges the invaluable contributions of those with lived experience in healthcare research.

New research by Flinders University published in the Patient Education and Counselling journal exposes underlying issues in academic engagement and calls for better processes to credit those with lived experiences.

“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,” says Associate Professor Elizabeth Lynch.

Associate Professor Lynch from the College of Nursing and Health Sciences says that the study highlights the importance of recognising the value of people with lived experience and increasing the visibility of their contributions.

“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,” she says.

“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 over 70 academics and community members with lived experience to explore whether they would like to be recognised within formal research papers and what that process would look like.

“While 63.9 per cent of lived experience contributors wanted their input to be publicly recognised and visible to readers, 27.8 per cent said that this would depend on the research topic and audience,” she says.

“This contrast is perhaps due to certain health conditions carrying stigma, such as mental health or HIV, where contributors may not feel comfortable being publicly acknowledged for their input.”

The study also explored the preferred terms and titles that would be attributed to contributors such as  ‘lived experience expert’ or ‘consumer’.

“We found that the term ‘person with lived experience’ was the most favoured term with more than 70 per cent nominating it to be used in research terminology moving forward,” says Associate Professor Lynch.

“It is critical that journals, publishers, funders and research institutes make relevant administrative changes to enable those with lived experiences, in some cases without formal academic affiliations, to be easily included as co-authors.”

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.

“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,” she says.

The paper, ‘Credit where it’s due: Recognising lived experience in research authorship’ by Elizabeth Lynch, Lana Earle-Bandaralage, Sarah Eley, Agustina Gancia, Stacy Larcombe, Shyamsundar Muthuralingam, Louise Townsin, Hannah Wardill and Nadia Corsini was published in Patient Education and Counselling. DOI:10.1016/j.pec.2024.108472