7 Nov 2023

Much research has been published on patient, service user, carer and public involvement in various health and social care settings. And there have been many studies too of when, why and how people have been involved in research. But perhaps involvement when systems go badly wrong has not been explored as much as it might.

Sometimes involvement is described as “good” or “bad” based on whether the patients, service users, carers and members of the public involved feel valued and supported and are able to make a difference. This is indeed important. Yet matters may be more complicated.

Disasters and near-misses

While there are many good news stories connected with the NHS, serious failings have been in the headlines several times in recent months. Sometimes this is down to organisations not having enough resources or staff, yet there have also been serious longer-term lapses, for instance in maternity and infant safety. Other examples include frail older or other disabled adults not receiving basic freedoms or vital care. Systems meant to prevent, or swiftly deal with, problems have often not worked properly, despite various inquiries and recommendations.

Sometimes deep-rooted social inequalities are reflected in who gets hurt worst by major failings, or is most vulnerable if a whistleblower. It may be widely assumed that some types of patients are less credible than others when asking for pain relief or other help (for instance if minorities and/or women) or that their suffering is more-or-less inevitable (for instance if older or disabled people). Or processes and equipment may be designed for people who meet a certain “norm”, while actual patients come in various shapes and sizes, communicate in varying ways, have different cultural and support needs and so on, though staff may make real efforts which partly overcome these design flaws.

And hierarchies in health and care institutions can make it harder for concerns to be heard, with more junior staff, as well as patients and carers, less likely to be listened to properly. Also discrimination and disadvantage have an impact, so that white men from middle or upper class backgrounds may be less likely to be brushed off if pointing out problems.

Systemic failures

Yet I have been struck by how, in trying to grapple with systemic failings, sometimes even people with high status or in apparently powerful roles may feel powerless to set things right. At times, when systems go badly wrong, pushing for change can perhaps be like wading through a treacherous swamp in a fog, with the risk of being sucked down if one struggles too hard (though there may be a handful of people with flashlights and detailed maps). As has often been pointed out, how power is exercised and by whom in a complex system may not always be obvious; and systems may not yield the intended results even if everyone falls in line.

Unintended consequences

Action by patients, families and other campaigners (a non-official form of involvement) has sometimes played a key part in achieving change. However, those involved in more formal ways, for instance as community representatives on committees or through official watchdogs, may be affected too when there is a scandal, whether they had been flagging up concerns for ages or failed to realise how bad things were. While the spotlight will usually be on key staff in provider and regulatory bodies, patients and public who took on responsibilities with the aim of improving care for others may face stress and uncertainty.

Amidst possibly conflicting views and raw feelings among those involved, situations of this kind can be hard to research in sensitive ways. Yet perhaps such cases deserve more attention from researchers, with, of course, active involvement by those with direct experience (or support for them to research these if interested), along with instances in which involvement may have helped to fend off disaster.

With regard to research, certain kinds of projects are highly unlikely to go spectacularly wrong. So, however well or badly involvement is handled, the chances of finding that the study one is involved in, is in the midst of a storm of negative publicity may be low. However this is not always so.

For example, drug trials in which hazards for certain types of participants are seriously understated can be tricky for public contributors, alongside others undertaking research. Study teams might try out ways to reduce pressure on services by shifting more responsibility for care from professionals to high-risk patients and unpaid carers, without adequate safeguards, which could go wrong. Service user researchers may be in an especially awkward position if intense controversy arises, perhaps coming under pressure from different quarters.

Identifying risks

In the field of research too, sometimes systems meant to prevent problems are better at picking up minor breaches (or what may be unusual but acceptable) than serious risks. Ethics approval processes, for instance, can vary in how effective they are, especially if certain risks are not well-known. And, while social inequalities are often reflected in the direction of research and who can influence what, there may be different ways in which power is exercised. For example, people with lived experience who are involved may occasionally be able to spot, or say, what others cannot and so fend off potential catastrophe.

On other occasions though, what happens may be messy and distressing to patient, service user, carer or public contributors as well as researchers, who may occasionally have lived experience. Genuine involvement, even co-production or user-led research, does not guarantee that this will not happen. But perhaps if diverse people with relevant lived experience help shape research, equity is embedded using helpful resources such as (https://forequity.uk/hiat/) and asking awkward questions is encouraged, potential problems may be less likely to be overlooked or swept aside.

Better support and more effective prevention

Deepening knowledge around involvement when systems go badly wrong in health and care delivery and research may help strengthen support for patients, service users, carers and members of the public involved, if the unexpected occurs. And it may assist in identifying how future risks might be reduced, through learning with and from those whose experience may otherwise go unheard.