Cooperating for shared goals may achieve more than working at cross-purposes or competing needlessly. Those in charge of health and social care are often urged to take a more joined-up approach. Sometimes such calls extend to patient, service user, carer and public involvement, in research and beyond. Yet attempts to achieve greater integration, for instance in service planning and delivery, have often run into problems. I believe that there are lessons to be learnt; and, in involving people, some things might work best when done jointly, others separately, while making use of opportunities for shared learning and development.

Joined-up approaches

Over the years, I have greatly valued opportunities for mutual support and shared learning with others working in the field of involvement in health and care research and, before that, planning and delivery. When involved in public services myself, I have also gained a lot from the thoughts and experiences of others. And, in my job, I draw on knowledge gathered in varied settings. It can be enjoyable too to discover fresh things, in a field which matters to me, and comforting to know I am not the only one struggling with certain challenges! Networking has been vital to this.

All the same, I would like to sound a note of caution. Terms like “joined-up” and “integrated” can easily become buzzwords – after all, few people would say that they want to act in a disjointed way so that things disintegrate! But there may be lessons to be learnt from what has sometimes gone wrong when trying to better coordinate, or bring together, health and care at personal or collective level points, without carefully considering possible pitfalls as well as benefits. To do this well, it is helpful to listen attentively to diverse individuals, families and frontline workers when developing, and trying out, new ways of working (there may be valid reasons for something which at first seems irrational) and be willing to change tack if something does not work.

Some patients and families have to liaise with a bewildering range of professionals and organisations and can be shunted among these when trying to get help or be pointed in opposite directions. Or alternatively people can fall through gaps. So it is not surprising that more “joined-up” approaches may seem sensible.

However different systems may work in very different ways, with different types of expertise. There can be different aims in working together in health and care, such as improving service user and carer experiences or cutting costs, so that priorities may need to be decided to avoid confusion. Also, there can be different forms of “integration” or “coordination”, for instance focusing mainly on relationship-building and shared understanding which promote cooperation, formal or informal, to improve access to high quality care, or alternatively on new management structures offering control over previously separate services, as well perhaps as “efficiency savings”. Paradoxically, the latter approach, without attending enough to the former, may end up being less coordinated and more expensive. Yet when partners understand and appreciate the importance and often distinctiveness of what each does and can relate well, informal and sometimes formal cooperation can flourish.

What is more, laws and ethical codes governing NHS and social care services, and how these are resourced and organised, differ considerably, along with variations within these. Yet on the ground as well as at senior level, there are numerous examples of cooperation which benefit service users, sometimes led by people with multiple conditions or carers. These are often founded on empathy, imagination and willingness to listen, above all to the patients and service users whose needs are meant to be addressed, which is not to say that charts, plans and budgets do not have a role. Indeed, in a range of ways, those in senior positions can greatly help or hinder coordination across current team and organisational boundaries.

Similarities and differences

Different types of involvement have much in common, I believe, at least if done well (though researchers in this field may have more in-depth knowledge). Clear communication, attentive listening, commitment to letting people’s views and experiences help shape what happens, respect for diversity and equality: these matter across varied settings. There are also practical matters such as getting everyone relevant together in the right place at the same time, and sorting out necessary payments, which can be more complicated than it sounds. 

However, there are also differences, for instance on who should be involved, in what and to what extent. Involvement may be an aspect of someone’s role in a project, perhaps alongside recruiting study participants or conducting research, or their whole job. This could be for a particular study, theme or department or at a wider level. Involvement workers may have varying degrees of influence, for instance in being able to speak out if they fear that involvement might be tokenistic or on other ethical concerns, e.g. if they think risks to participants are being underplayed or possible benefits exaggerated. Also, importantly, there are different legal and ethical frameworks for involvement in research and in service commissioning and provision (or withdrawal of these), which have more immediate effects on patients, service users and carers. 

Yet there can be benefits from more cooperation in research involvement, not only in burdening the same patients, carers and communities less often with multiple requests from different sources but also in making it easier for them to be involved if they so wish. Relationship-building can also assist “match-making” between researchers and people with relevant lived experience and their organisations who have ideas on research topics and questions. 

Patients, their families and communities may also wish to find out more about recent relevant findings and draw on these to improve prevention and care in their areas. Here “knowledge brokers” with a scope beyond individual research teams and organisations may have a part to play. While researchers and public contributors on a specific project may rightly wish to promote what they have discovered, people and groups concerned about particular aspects of health and care may have a broader interest in relevant research, whoever carried it out. 

And when integrated care bodies, NHS providers and local authorities more fully take on board the opportunities offered by research, this opens up fresh scope for collaborative involvement. Busy individuals and groups advising on services may not necessarily want to advise on research studies too but may have useful ideas about issues, priorities and concerns. Cooperating in involving people can be fruitful and enjoyable, if a one-size-fits-all approach is avoided. 

 

Read more about involvement at ARC South London