Public involvement in multiple long term conditions research – what do we need to think about?

When individuals have two or more chronic illnesses this is referred to as multiple long-term conditions (MLTCs). In the UK alone, a fifth of the population - 14 million people - live with MLTCs. Research into MLTCs is vital for understanding how common MLTCs are, impact including effects on quality of life and early death, and how we can best support patients with MLTCs.

We know that involving individuals with MLTCs in designing and conducting this research is essential because they offer firsthand experience and unique insights into managing these complex health challenges daily.  So whilst we know involving people with lived experience of MLTC and their carers in the research process can be extremely beneficial, this is not yet standard practice and we are still learning about the best approaches and how to navigate the challenges which come with this.

In May 2023, the ARC East Midlands held a research event that focused on implementation research in MLTCs.  Implementation research focuses on figuring out the best ways to put proven solutions into practice in real-life settings, like hospitals or communities.  During this event we held a Public Involvement (PPIE) workshop with researchers, patients and carers, to understand the PPIE issues and challenges specific to MLTCs. We asked:

  • Is there anything special about public involvement in the context of MLTCs?
  • What key PPIE challenges will we face?
  • How might we organise ourselves going forward?

We learnt that research into MLTCs is complicated because of the range of patients and carers who can be affected.  For example, MLTCs can affect all age groups and can be combinations of many different long term conditions. This makes getting the ‘right’ lived experience into the team very difficult.  Other issues also make research difficult such as engaging carers in research, concerns about poor diversity in PPIE groups, and the fact that the term ‘MLTCs’, doesn’t mean anything to the general public.

Suggestions for improving PPIE in MLTCs research included:

  1. Building a national MLTCs PPIE network involving a broad spectrum of people with lived experience - different cultures, ages, conditions experiences of care etc.
  2. Recognising the common experiences across conditions.
  3. Including the experience of caregivers.
  4. Making the network flexible, embedded in decisions, inclusive and focused on long-term relationships, and capacity building.
  5. Identifying people and networks to involve through existing condition-specific groups.

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Published on: 20 Mar 2024