Models of Care for people living with Multiple Long-Term Conditions

Models of Care for people living with Multiple Long-Term Conditions

Research priority setting

PPI meeting 2nd October 2025

Posted by Jo Butterworth

13 October 2025

Summary by Aziza Sallam, postdoctoral research associate

Industry event

This section of the meeting focused on preparing for an upcoming industry engagement event in November, organised at a national level across NIHR workstreams on MLTC. Around 50 industry representatives are expected to attend, including CEOs and leaders from pharmaceuticals, digital health, biotechnology, medical devices, education, and consultancy. The purpose of the event is to introduce the MLTC research agenda, communicate key challenges faced by patients, carers, and clinicians, and begin building partnerships with industry. 

Attendees discussed how best to communicate these messages: 

  • Use of personas: A draft persona has been developed to represent the lived experience of people with MLTC. Contributors suggested having at least two personas, one for a patient and one for a carer, and ensuring diversity, inclusion, and equity (EDI) are reflected. Visuals or short, powerful images were recommended to make the personas more engaging. 
  • First-hand lived experience: Several contributors highlighted the stronger impact of having someone with lived experience (patient or carer) speak directly at the event, in addition to or instead of using personas. Others felt personas allow for broader representation, so a combination may be best. 
  • Content balance: While it is important to show challenges and barriers, contributors emphasised also highlighting examples of good practice and what effective, person-centred care can look like. 
  • High-level framing: Participants advised tailoring messages for senior industry leaders, focusing on concise, impactful communication. Including references to economic value and cost-effectiveness (e.g., reducing inappropriate medication, improving care coordination) could resonate strongly. The involvement of a health economist was suggested to provide evidence of financial benefits. 
  • Future opportunities: This event is seen as an introductory step to establish dialogue, with potential for more interactive involvement of public contributors in future workshops. 

Overall, the session provided rich input on how to shape the event presentation. The group agreed that a mix of personas, lived experience, and clinician perspectives, supported by clear, high-level messages (including financial impact and equity considerations), will be most effective. 

Project Update

An update was presented about the Equality Impact Assessment (EqIA), scoping review and priority-setting partnership (PSP)  

  • Equality Impact Assessment has been completed by a summer student and published on the project website, ensuring inclusion of underrepresented groups. 
  • Scoping review progress: Over 11,000 studies were screened, reduced to 19 relevant studies after duplicates and exclusions. A data extraction table has been set up to capture details such as study setting, population, models of care, stakeholder involvement, and research recommendations. 
  •  The PSP protocol has been completed and a summary provided online. 
  •  A steering group is being formed, including patients, carers, professionals, voluntary organisations, and policymakers. Members will meet online (4–6 times) with an expected commitment of 2–3 hours/month. 

Discussion Points: 

  • Survey design: Contributors emphasised balancing yes/no questions for simplicity with free-text options for richer responses. Suggestions included showing all questions upfront, grouping them under headings, and being realistic about time commitment. 
  • Focus of survey content: Participants stressed capturing the complexity of MLTCs, including relationships between conditions, rather than oversimplifying. 
  • Scoping review findings: Questions raised about screening process. Evidence to show gaps and uncertainty rather than presenting an overly neat conclusion. This would strengthen the rationale for setting new research priorities. 
  • Comparisons with JLA: Questions were raised about how the PSP compares with James Lind Alliance methods. The team explained the process is similar in principle but adapted, using JLA guidance without formal JLA branding. Dissemination will be key to ensuring impact. 
  • Equality Diversity and inclusivity: Concerns were raised about models of care relying on stereotypical patients rather than lived experiences. Contributors emphasised the need for person-centred approaches and capturing diverse perspectives. The Equality Impact Assessment will guide inclusivity, though resources are limited. 
  • Next steps for feedback: The draft survey will be circulated to participants for review before piloting. 
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