There is now a mini-mountain of information about local health and care needs, services, issues and experiences in every part of England. Yet gaping holes in understanding exist, which perhaps can only be plugged if patients, carers, communities, professionals and researchers work together.

In quite a few countries, the level of detail which exists on the health status of individuals and neighbourhoods and services provided to them, local factors affecting wellbeing, how these have changed over time and so forth might have seemed staggering even a half-century ago. And research findings pour out week by week on how best to treat or prevent many different conditions or combinations of these or provide social care. Surveys, apps, sophisticated tests and imaging provide further facts and figures. Advances in information technology have made much of this possible, including being able to probe possible links between factors.

Yet, as we have been reminded in the Post Office scandal, computers have also been used to ‘prove’ connections which do not exist and make it harder to believe those affected, at great cost to their mental and physical health. Thousands of apparently unexpected deaths were identified among users of a mental health trust over a few years, in many cases, without being clear about the causes. Nor can it be assumed that this is unique. Creating dense forests of data is one thing, making sense of this another.

In addition while, every week, research findings on many aspects of health, social care and prevention appear, often these do not grapple with the complex range of influences on how healthy or unhealthy people are, the care they receive and how clusters of conditions and risk factors interact, let alone what it feels like in that situation. It may be easier to get articles published in prestigious journals if sticking to what is fairly clear-cut – but this sometimes seems remote from the experiences of those with highest levels of preventable ill health and inadequate care. It also means that actual or potential strengths arising from mutual support and collective action, as well as individual effort, which make a positive difference, may not be identified and explored.

Meanwhile, for large swathes of the population, health and care have on the whole got worse in recent years rather than better, despite sometimes exciting advances in science. This is due in part to austerity and an increasingly hostile environment for certain minorities, amidst other factors increasing social and economic inequalities. And longstanding challenges remain in drawing on research findings to help shape practice. Sometimes the sheer volume of information can make it harder for those who might push for improvements to benefit them, their peers or neighbours to know what is most relevant.

Stronger and more diverse involvement in university and NHS-based research can make a difference, including greater opportunities for researchers living with the conditions (or from the sections of the population) being researched. So is recognition of the research done by patient and community organisations and other ways in which they develop knowledge. These were among the issues explored at Active Involvement in Research 2023, a full report of which is now available here.

Intersectional  approaches are hugely important. But, as I pointed out in a presentation then, often those facing greatest inequalities are least likely to be counted or have their details fully and accurately recorded. Lack of safety, access and resources can get in the way of exploring diverse experiences, as well as weaknesses in research culture and structures. And contexts keep changing. Making sense of connections and exploring possible solutions can be complicated. Bringing together knowledge from varied sources and perspectives, especially from people with relevant lived experience, and sharing insights and challenges can be helpful.

There are also differences in power and perspective among service users and within communities, as well as between researchers. To make best use of the data and knowledge which exist, identify priorities for research, carry this out well and share findings widely, it is perhaps important to recognise the gaps and why these may be hard to fill.

Many people with high levels of health need are weighed down by the struggle to survive or assist loved ones to do so, trouble in putting thoughts and experiences into words or being heard if they do. Being wary about others’ reactions to some aspect of one’s identity (which may be hidden from even family and friends), internalised shame – including about financial problems amidst the cost-of-living crisis – or just not fitting neatly into categories, for instance if in temporary accommodation without a stable “home” address or neighbourhood, can make it even harder to be respectfully heard or, sometimes, just noticed. At the same time, if people from marginalised groups organise so as to be better heard, even if they make convincing arguments they may be seen as “strident” or more unreliable than people in official positions or with impressive qualifications.

It is tempting to be mesmerised by vast quantities of “facts” and figures. Being willing to acknowledge the uncertainties and gaps, bring together different kinds of knowledge and work together in ways which centre lived experience, and the importance of justice, can help in developing and harnessing knowledge to improve health and wellbeing.

Read more about Active Involvement in Research 2023