This is a plain English summary of an original research article. The views expressed are those of the author(s) and reviewer(s) at the time of publication.
Investigations into life-changing medical harm (including injury or death) aim to establish what happened, learn lessons, and bring justice to the people affected. Research found that those who have experienced harm want reviews to be transparent, trustworthy, and person-centred to meet their needs. People want to be meaningfully involved in the process and to be treated with respect and empathy.
Researchers from the University of Exeter analysed 41 studies exploring the views of people who had gone through an investigation of a life-changing event.
The findings could help the NHS conduct reviews that feel and look fair to people who have experienced medical harm. They could help people understand what to expect from a fair process.
More information on how to make a complaint is available on the NHS website.
The issue: what do people want from investigations of medical harm?
The NHS investigates medical harm to learn from mistakes and make services safer. Investigations can improve monitoring and reporting of safety incidents, for example. They also allow people who have experienced medical harm and/or their families to be heard. Some receive compensation.
NHS Resolution is responsible for investigating medical harm. It aims to settle cases early and learn from past mistakes. The NHS Patient Safety Strategy and the national medical examiner system also aim to improve patient safety, safety issue reporting, and support bereaved families. In some cases, medical errors have been investigated but families feel that they didn’t get justice and remain traumatised and angry.
Little is known about how people and their families experience investigations held after a life-changing event. This study reviewed existing evidence to find out more about what people think is a fair investigation process.
What’s new?
The review analysed 41 studies, mostly from the US, the UK, or Australia. Most explored medical harm (31 studies), but some sought the views of people seeking justice after other life-changing events, including murder (3 studies) and sexual abuse (2 studies).
What does a fair process look like?
The research found that fair processes were: 1) transparent; 2) trustworthy; and 3) person-centred.
1. Transparent
People seeking answers following a life‐changing event (justice-seekers) wanted an honest account of what happened, the circumstances leading up to it, and measures to ensure it does not happen again. They needed explanations of decisions made during the review process. Investigations that appeared biased could cause anger, uncertainty, and suspicion: “They just seem to want to fob us all off and hope we'll go away. They don't seem to be taking the complaint serious enough.”
2. Trustworthy
Processes that, for example, involved people independent of the organisation responsible for harm gave investigations credibility. Justice-seekers appreciated having the chance to meet with those they saw as responsible for the harm. Lengthy reviews weakened confidence: “We are drawing this [review] out longer and longer… I shouldn't have to sacrifice my own health and wellbeing just to get answers.”
3. Person-centred
Meaningful involvement of the justice-seeker included early agreement on the scope of the review and what people hoped to achieve from it, plus at convenient times, and locations for meetings. People had different goals that they wanted met from the review process. For example, some might want confirmation that their future health needs would be met. Receiving a sincere apology with responsibility accepted was vital for many. One person said, “The apology …meant so much. I was amazed at how my feelings could change.”
Legal aid for all parties created a level playing field. Providing justice-seekers with emotional support and a consistent point of contact supported them to take part in the review processes. Allowing people to appeal decisions in a timely manner was helpful.
What does a fair process feel like?
Justice-seekers wanted to be treated as an equal with respect and empathy. Well-conducted reviews could help them close a chapter in their lives, validate their emotions, and bring accountability to those responsible: “It's…fundamentally about being heard and being able to look the health professionals in their eyes, [and] tell your story.” Ensuring that lessons are learned could bring meaning to traumatic experiences: “The [review]… lifted a great weight off my shoulder. I didn't feel like it was about guilt anymore. It was about acceptance.”
Being involved with the review process was very meaningful for some people. Others appreciated opportunities to speak to staff in health organisations about their experiences, or bring about change in health care processes.
Why is this important?
This research provides insights on how to conduct a fair review into instances of medical harm. The findings could also help people who have experienced medical harm and their families, to understand what they can expect from the process. The recommendations are relevant both to recent and historical investigations, the researchers say.
The analysis could not identify the ethnicity or gender of the justice-seekers, so it is unclear how generalisable the findings are. In addition, some studies examined reviews of non-medical events and therefore those findings may be less applicable to medical harm.
What’s next?
The researchers delivered their findings to the Department of Health and Social Care in July 2022.
You may be interested to read
This is a summary of: Shaw L, and others. Patient, carer and family experiences of seeking redress and reconciliation following a life‐changing event: Systematic review of qualitative evidence. Health Expectations 2023; 26: 2127 – 2150.
Information from The Harmed Patients Alliance, which supports those who have experienced medical harm.
A summary of this paper for a professional audience.
An infographic illustrating the study findings.
The full government report on seeking redress and reconciliation following medical harm.
Funding: This study was funded by the NIHR Public Health Research Programme.
Conflicts of Interest: None declared.
Disclaimer: Summaries on NIHR Evidence are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that the views expressed are those of the author(s) and reviewer(s) at the time of publication. They do not necessarily reflect the views of the NHS, the NIHR or the Department of Health and Social Care.
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