Patients are being better recognised as experts in health news reporting

New survey research by City St George’s, University of London for the Academy of Medical Sciences found that broadcast media programmes are increasingly featuring patients and people with lived experience as experts rather than case studies. 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.

The study 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 news programmes. The programmes monitored were ITV News at Ten, BBC News at Ten, Channel 4 News at Ten, and BBC Radio 4 Today.

Of the 18 routine health stories that aired between October 2023 and April 2024, 31 out of 39 contributors were presented as case study examples, and not as people with any expertise, influence or agency in the story. 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.

By contrast, monitoring of two days’ coverage of the Infected Blood Inquiry showed that all patients or people with lived experience interviewed were either formally identified or presented as experts. They were asked about their knowledge and understanding or their influence on policy and events rather than as case studies, even when they had no official or professional titles.

In coverage of the Infected Blood Inquiry, patients and those with lived experience dominated the coverage with 34 interviewed compared to 16 professional experts, such as doctors, professors, academics and politicians.

Of the 16 professional experts interviewed in coverage of the Infected Blood Inquiry, only two were women (13%).

Of the 34 patients and people with lived experience interviewed, 18 were men and 16 were women. Only one of the 16 women interviewed had been physically affected by infected blood. Most of the women interviewed (15 out of 16) were family members campaigning on behalf of loved ones or in their memory. Although men were the recipients of 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.

The research was carried out by Professor Emerita Lis Howell, Director of the Expert Women Project and Professor Suzanne Franks, Professor of Journalism, ahead of the Expert Women: Ten Years On conference at City St George’s on Tuesday 8 October 2024.

Panellists included:

• Jacqui Thornton, health journalist
• Heather Evans, widow, Infected Blood Inquiry
• Tom Feilden, BBC Radio 4 Science Correspondent
• Lynn Laidlaw, Co-Investigator COVID Shielding Voices
• Catherine Jones, Channel 5 News Health Correspondent
• Rt Hon Baroness Harriet Harman
• Jacqui Thornton, health journalist
• Monica Dolan, actor in ‘Sherwood’ and ‘Mr Bates versus the Post Office’.

Professor Emerita Lis Howell believes the Ockenden Report in 2022 and the Post Office Horizon IT Inquiry may have led to lived experience voices being treated with more respect. She hopes to see similar pattern in reporting around the UK Covid-19 Inquiry. She 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.

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.

Including the voices of patients and lived experience experts alongside those with professional experience is not a nice to have, it’s a must have in today’s health news reporting.

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.