Broadcast media programmes are increasingly featuring patients and people with lived experience as experts rather than case studies, suggests a new survey by researchers at City St George’s, University of London for the Academy of Medical Sciences.
The findings were announced at the Expert Women – Ten Years On conference during a panel session hosted by the Academy on developments and opportunities for expanding lived experience voices – and women’s voices - in news media. The panel, chaired by health reporter Jacqui Thornton, included Heather Evans, who has spoken in the media in memory of her late husband Perry and those affected by the Infected Blood Inquiry; Lynn Laidlaw, Co-Investigator COVID Shielding Voices, and patient observer on Academy Council; Catherine Jones, Channel 5 News health reporter and Professor Tom Solomon FMedSci, Vice-President International at the Academy of Medical Sciences.
Although small in scale, the results are encouraging and indicate where there may be opportunities to present a broader diversity of expert voices in news reporting.
Since the first data from the Expert Women Project was published in 2014, the Academy has been working to increase the number of biomedical and health science women experts commenting in the media by providing its award-winning training to Fellows and though our SUSTAIN programme, which has successfully media trained more than 160 women experts.
Since 2020, the Academy has also supported and promoted patients and lived experience experts to comment in the media as spokespeople for policy working group reports, including the launch of our Future-proofing UK health research report in 2023 and our recent Prioritising early childhood to promote the nation’s health, wellbeing and prosperity report. The new research from City St George’s explores for the first time what the gender representation of these types of expert voices is.
The survey, led by Professor Emerita Lis Howell, Director of the Expert Women Project and Professor Suzanne Franks, Professor of Journalism, compared broadcast coverage of the Infected Blood Inquiry in May 2024 with reporting of routine health stories between October and April 2023/24 on flagship UK national news programmes - ITV News at Ten, BBC News at Ten, Channel 4 News at Ten, and BBC Radio 4 Today.
It shows that of the 18 routine health stories that aired between October 2023 and April 2024, fewer than a quarter (8 out of 39) of patients or people with lived experience, such as family members or carers of those affected, were presented as experts during interviews. In contrast, two days’ coverage of the Infected Blood Inquiry formally identified all patients or people with lived experience as experts when interviewed. They were asked about their knowledge and understanding or their influence on policy and events rather than as case studies.
Additionally, media interviews on the Infected Blood Inquiry featured almost twice as many patients and those with lived experience than professional experts, such as doctors, professors, academics and politicians. Although men received infected blood in a large majority of cases, 47% of those campaigning for justice for them and presented as experts by experience in news broadcasts were women. Similarly, in the monitoring of routine health stories, women featured as patients or lived experience experts about three times more often than men.
Professor Emerita Lis Howell said: “The analysis of the Infected Blood Inquiry Report shows a very different attitude by programme producers to patients and people with lived experience.
“The results suggest a step change to health reporting, where patients are being recognised as experts and not just examples. More women are being featured as patients with real insight and ability to influence policy. This is a game changer: those at the sharp end of scandals may be finally finding their voices.”
Lynn Laidlaw, Co-Investigator COVID Shielding Voices, event panellist and Patient Observer on the Council of the Academy of Medical Sciences, said: “I work with research and policy teams conducting and reporting on research, using a mixture of my lived, research and policy expertise. Combining different perspectives in this way leads to deeper understanding and outcomes that matter to the people and communities affected.
“It's heartening that journalists are responding to this way of working and changing the culture that existed, where expertise was tightly defined and the patient role was only to tell our story.”
Commenting on the survey results, Nick Hillier, Director of Communications and Engagement, Academy of Medical Sciences said: “Recognising that expertise comes in many different forms helps tell authentic and trustworthy stories and ultimately informs research and decision making at all levels. Better decisions are made when patients and the public are involved from the start.
“The survey shows that profiling lived experience experts on the news agenda also provides opportunities to increase the diversity of voices we hear, and better reflect the society we live in.”
The Academy is committed to meaningfully involving patients and the public across all activities, and to fostering a research community that is trusted, open, diverse, collaborative, and inclusive.
To build on the progress already made, the Academy recently piloted a new six-month programme of development activities – ‘Public Engagement with Research programme’ – to proactively engage with and remove barriers for participants from underrepresented communities to take part in future patient and public involvement (PPI) activities.
The programme demonstrated a strong desire from public participants to be involved in research and decision making on medical science and health. Many commented how it had increased their skills and confidence to step forward and take part in involvement activities. We are working to connect individuals from the programme with people and organisations looking to increase public and patient involvement in their work. Please contact [email protected] if you have opportunities for Public Engagement with Research programme participants across the sector.
We hope that many of the participants in the Public Engagement with Research programme will go on to take part in a scheme launched by the Academy last year that provides funding to patient and public contributors to help researchers develop applications for Starter Grants for Clinical Lecturers. If you are a Clinical Lecturer looking to develop and strengthen your research career and are interested in linking with patients and the public to develop your ideas, read more about supporting patient involvement in Starter Grants applications.