Every week, huge numbers of research-based articles appear on health and social care. These often contain valuable knowledge. Yet the overall picture which emerges may be of an unrealistically neat and orderly world. Involvement can help in understanding how services actually work for diverse people, around the clock, and why complex factors affecting wellbeing; and what might make a difference.
Most organised involvement probably happens in the daytime or evening. Perhaps a lived experience contributor might do her best work when others are asleep, making notes in the middle of the night about interpreting data from a study. Or members of an international network of mental health survivor researchers might meet remotely when it is very late (or early) in certain time zones. But activities to involve patients, service users, carers and the wider public in shaping research are not usually held at night.
Yet the insights, and questions, which can inform and deepen research, and increase the chances of drawing on this to bring about positive change, can arise at any time. Indeed, sometimes, night can be a time rich in experiences and ideas, even if these sometimes touch on difficulties and challenges as well as achievements.
Unsurprisingly, different people and groups may look at the same situation from different angles or focus on different aspects. Rival newspapers may describe the same public figure in grim or glowing terms. I wonder what general impression someone might get about health and care just from glancing at academic journals (beneath a layer of technical details) or news items based on research findings? These might offer a partly true, but in some ways skewed, view of reality, at least from the perspective of many service users, carers and frontline staff.
A comforting emphasis on orderly progress may come across - though this may raise the question of why so many people still suffer due to preventable ill health. Research based on what can quite easily be measured or counted, and “good news” stories about changes which have improved things or could do, may be highlighted, for understandable reasons.
Researchers often really do want to make the world better; much of the public is drawn to certainty or at least confident-sounding claims by “experts”; and funding sometimes relies on emphasising how research has led to advances backed by reliable evidence
There are also some articles on how failure by patients or professionals to follow good practice has led to problems which could be fixed with more effort, confidence or dealing with unrecognised fears or urges: and at times this is indeed true. Occasionally the effects of individual prejudice or organisational cultures promoting discrimination are explored – and goodness knows these can be serious problems.
Such work is often improved by input from public contributors. Yet sometimes this focuses on slightly reshaping aspects of a study the direction of which has already been set. Even lived experience researchers may feel under pressure not to stray too far from whatever is “mainstream” in their field of work.
At times too, what people want from being involved in research is understandably clear-cut. For instance, they may want fewer people with a similar condition or risk factors to theirs to be harmed by medication side effects or neglect in care settings. Or they may have experienced wonderful treatment for a particular problem and would like others to have the same opportunity. But there is a risk that overall, because of social norms, research culture, wishful thinking or hype, what is perplexing or disturbing, yet important, may be sidestepped.
In a song popular when I was a child, by Frankie Valli and the Four Seasons, a lover pleads with his beloved not to choose his smooth-tongued but untrustworthy rival instead. “If the day could last forever”, illusion could be held on to, but he urges (probably) her to trust her own awareness, during “The night”, that this would be a mistake. Where research is guided, in part, by questions arising from the challenges, uncertainties, upsetting or unruly thoughts and feelings which can arise at odd hours, it can be enriched greatly, even if such work uncovers what is uncomfortable and cannot always be readily fixed.
I invite you to imagine some night-time scenes. Perhaps a patient on a trolley in a corridor is waiting for pain relief, after an overstretched nurse has had to rush to an emergency elsewhere in the hospital. A care home resident with long-Covid, still trying to make sense of what happened, may dream of friends who did not survive. Someone sleepless at home may be afraid to call the mental health out-of-hours service again in case she is seen as a nuisance, while anyway there may be no one available to listen. Without enough money for a minicab, a person who has just learnt that his father is critically ill may be trying to figure out how to get to the bedside, if there is no night bus.
At home an increasingly frail older person, whose social care assessment was delayed, may be struggling to get to the toilet and back without falling. A mother may be listening out in case her child has another asthma attack and wondering what might persuade the landlord to get rid of the mould on the walls. In an understaffed prison, a resident racked by trauma, addiction and guilt at his own actions may be dreading yet another day of boredom with moments of brutality. A youth project volunteer in, and from, a community facing multiple disadvantage may replay in her head scenes from the past day and worry if she did enough to keep a service user safe.
People vary in how involved they wish, or feel able, to be. Yet diverse lived experience, drawing on times where doubts, concerns and dilemmas are harder to set aside, and systemic weaknesses more apparent, can helpfully inform what is studied, how and what use is made of findings
Staff thoughts and feelings can also help to broaden and deepen research. Maybe, with no interpreter available before daybreak, a midwife is worrying she cannot understand why a woman in labour seems distressed, a service manager about grim choices ahead as money is about to run out, or a specialist nurse wondering how a particular drug combination might work for a 90-year-old.
Studies following familiar patterns and yielding clear-cut answers have their value. Bringing together multiple insights, from night and day, can further enrich, though sometimes complicate, research.