We ran a Priority Setting Partnership (PSP) with the James Lind Alliance to prioritise research into safe care for adults with complex health needs. The aim was to identify those research areas which could make the greatest difference to these people, and those who care for them.

We define adults with complex health needs as those who have more than one illness/disease/condition/disability, or those who need care in more than one setting. For example, these people might have both diabetes and depression. They may also need treatment and care from a range of specialists and services, such as GPs, hospitals, and mental health services. This care and support can also come from family members and friends, and take place at home.

Here are the top 10 priorities for research as defined by patients, carers, health and social care staff and members of the public:

  1. When people with complex health needs require care from more than one specialist or department, how can their needs be addressed in a way that considers the whole person through better organisation and team-working?
  2. How can communication be improved among professionals working in different organisations who are involved in the care of a person with complex health needs?
  3. How can health professionals be encouraged to listen to and value the expertise of people with complex health needs, in relation to treatment and management of their health condition(s)?
  4. How can we ensure that people with complex health needs are discharged safely from hospital, in a way that ensures their individual treatment, support and care needs will be met? How can we ensure that all of the services involved are committed to this?
  5. How can communication be improved among the health professionals within a single organisation who are all involved in the care of a person with complex health needs?
  6. When people with complex health needs receive care from different specialists, should one health professional oversee that person's treatment and care to improve safety?
  7. How can important information about a person with complex health needs be recorded in a way so that health professionals can access the key facts quickly?
  8. How can health and social care be better joined up, more flexible and responsive, so that a person with complex health needs can be regularly reviewed and their care plans changed as necessary?
  9. How can (paid and unpaid) carers’ knowledge of a person with complex health needs and their specific healthcare needs be recognised and used to improve and inform the care provided by professionals?
  10. To what extent do health professionals read patients' medical records before providing care to people with complex health needs? How can this be improved?

The surveys

To begin identifying the priorities, we first sent out a survey to patients, carers, members of the public, health and social care staff, asking them to come up with questions for research – and 450 people responded. These questions were then grouped and summarised by an Information Specialist (Kristina Staley), overseen by a Steering Group. We then looked at the current evidence to remove any questions that were already sufficiently answered by research. This left us with a list of 48 unanswered questions for research.

We then sent out a second survey, asking people representing the same groups as before to select the 10 questions that they thought were the most important, and then to rank them in order of importance. About 450 people filled out this survey too. The 23 questions that were ranked the most highly were taken forward to the workshop.

The workshop

We held a workshop on 17th December 2018, facilitated by James Lind Alliance advisers, to discuss the 23 questions for research. The diverse group came to a consensus about the top 10 priorities, spanning themes such as improving communication, making care more joined up, and valuing the knowledge of both patients and carers.

Next Steps

The PSTRC will widely publicise the most highly ranked questions to encourage research funding bodies and researchers to address them. It will also do research to try and answer some of the questions itself.

Steering Group and PSP documents

The PSP was led by a Steering Group made up of patients, carers, members of the public, healthcare professionals and people from organisations representing those groups. Please see the documents below for more details.

Contact details

Anna Lawrence-Jones, a.lawrence-jones@imperial.ac.uk, 020 7594 3149.

If you have any questions, please contact Anna.