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What matters to people with multiple long-term
conditions (MLTC): key areas of opportunity for
innovation and research to drive better care
Natalie Owen & Leanne Dew – National Institute for Health Research
What we mean when we talk about MLTC
Two or more long-term
non-communicable diseases
(mental and physical health
conditions); infectious diseases
of long duration
E.g. diabetes, dementia,
depression
Complex care needs
E.g. children with Cerebral Palsy
who have motor problems, visual
impairment and learning
difficulties.
Close the gap – Inequalities in MLTC
3
The Lancet Healthy Longevity 2021 2e489-e497DOI:
(10.1016/S2666-7568(21)00146-X)
• Socioeconomic deprivation is strongly related to the acquisition of
multiple long-term conditions, appearing some 10-15 years earlier
in people living in the most deprived areas compared with the
most affluent areas1
• In those aged 65-74, approximately 28% of people in the most
deprived fifth of England have 4+ conditions, compared with 16%
in the least-deprived fifth2
• In 2019, prevalence of age-standardised MLTC was highest in the
north east and lowest in London. Individuals from areas of greater
deprivation are more likely to be living with MLTC from an earlier
age, with greater dependency on health-related benefits,
increased healthcare utilisation and premature mortality3
1
Cassel et al. (2018) The epidemiology of multimorbidity in primary care: a retrospective
cohort study. British Journal of General Practice, 68, e245-251.
2
New horizons in multimorbidity in older adults | Age and Ageing | Oxford Academic
(oup.com)
NIHR’s Strategic Framework for MLTC
The NIHR will fund high quality research to provide an evidence base which:
• Identifies and maps common clusters of disease and their trajectories among the
population
• Identifies the issues and outcomes that matter most to patients and carers and how
they would like to see services configured to meet their needs
• Delivers research that enables the health and social care system to take a
patient-centred, whole person approach to the treatment and care of people with
MLTC, including quality of life and well-being
• Supports design and delivery of interventions to prevent patients progressing from
one long-term condition to MLTC.
Culture
within the
NIHR will
be key
Review funding processes (engagement, application, panel) to support applications.
Engage with the NIHR community to provide opportunities to move into research on
MLTC or include a MLTC lens explicitly in research projects.
Engage with delivery/ implementation colleagues to ensure that MLTC are recognised as
challenge, and that research is pulled through into practice.
Foster a multi-disciplinary workforce through a new generation of researchers working
beyond usual single disease specialisms.
Support and enable team science.
Promote a common terminology around MLTC that makes sense to funders, researchers,
practitioners, patients and the public
Ensure research/ trials do not unjustifiably exclude patients with MLTC; and encourage
collection of appropriate & consistent outcomes measures
What do people with MLTC want?
Theme What will this look like? Facilitated by? To provide what patients want:
Person-centred care and
empowerment
Interactions and partnerships within models of
care
Strong relationships and partnerships between
patients and clinicians
Patient-centred / recognise patient as expert
Support with self-management of multiple
conditions
Shared records to facilitate shared decision
making
Technology
Effective communication models
✔ Patient at heart of interaction
✔ Holistic care with shared planning & decision making
✔ Better information
✔ Clear packaging on medication
✔ Good listening and communication leading to understanding
Mental and Emotional
Wellbeing and Social
Isolation
Enabling bidirectional prevention of mental
and physical health problems
Integration of physical and mental health
services
Support when/where people need it
Communication / Effective
conversational models
Education & training for clinicians in
supporting MH as standard
Better monitoring and effective and
available interventions for
supporting MH/PH conditions
✔ Better understanding
✔ GPs/clinicians who are confident and able to have
conversations about MH
✔ MH services offered at regular and appropriate points
✔ Interventions to reduce social isolation and loneliness
Better Understanding of
Science Behind Multiple
Long-Term Conditions
Research: from linear pipeline to virtuous
circle
New research moving from single disease
pathway approach
- Incl. research on clusters
Research which does not exclude people with
MLTC
Funders working across translation
and disciplinary boundaries
Industry partners
Sustainable and attractive research
career paths for MLTC researchers
To understand:
✔ How conditions develop and interact;
✔ How conditions cluster;
✔ How treatments affect each other;
✔ Using quality of life measures alongside test results
Landing the
findings from this
research and
spreading
innovation will
need to take into
account the context
Patients and the
public need to be
at the heart
Clusters – a route into making MLTC manageable
Further building the
community
NIHR/MRC 2019
pump prime call
£3m
5 projects
NIHR/MRC SPF funding
‘tackling MLTC at scale’
£20m
6 Research
Collaboratives
NIHR/funding ‘AI for
MLTC’
£23m
Knowledge & Development – what
problem are we trying to solve?
What matters to people with
MLTC?
Review, Iteration &
Development
Discovery
Science
(Invention)
Implementation
Trials &
Interventions
(Evaluation)
Polypharmacy -
pharma and
technology to
promote adherence
Decision-making tools
for clinicians to assess
progression of risk
Information sharing apps to
reduce time spent by patients/
carers telling multiple specialists
their histories/treatment
Wearables to aid information for
self-management or
support/nudge towards healthy
behaviours
Drug development
or repurposing
What do we learn from
implementation that can
either lead to iteration or
feed back into discovery
science or trials? E.g. who
does it/doesn’t it work for
and what’s next
Scale and spread of
successful interventions/
treatments
Working with regulators
Underpinned by
data/digital
Tech & devices
(Innovation)
AI or diagnostic
technology
Personalised medicine
Academic / industry /
NHS collaboration
Thanks for listening………….over to you!!
Multimorbidity and inequality –
where do people’s experiences
point us?
Neil Tester
Director, The Richmond Group of Charities
@NTtweeting @RichmondGroup14
People’s experiences
and responses
Why the system can’t afford to
ignore this challenge
The Multiple Conditions Guidebook
https://richmondgroupofcharities.org.uk/taskforce-multiple-conditions
Focusing on health inequity
• Racial and economic inequity and their impact on health are
in the spotlight like never before
• Increased profile for multiple conditions agenda – CMO
annual report, White Paper on integration and innovation,
Secretary of State’s speech on disparities
• Right time to focus on the two-way relationship between
multiple conditions and inequity
Method and sample
How can policymakers and
professionals help?
The Richmond Group’s response and
recommendations
• NHS England should make a single senior leader clearly accountable for this agenda
across its structures and programmes.
• The Government should implement the key recommendation of Health Equity In
England: The Marmot Review 10 Years On by developing a national strategy for action
on the social determinants of health and their impact on health equity.
• The Department for Health and Social Care should embed an explicit focus on
multiple conditions into its priority to “improve, protect and level up the nation’s health,
including through reducing health disparities” and build this into the NHS Mandate.
• As NHS England reintroduces incentive payment structures suspended or changed
during the pandemic emergency response, and as it establishes new financial flows to
and within integrated care systems, it should ensure that it incentivises and resources
organisational and clinical behaviours that help to arrest people’s progress from one to
many conditions, and provide effective support for people already living with multiple
conditions.
The Richmond Group’s response and
recommendations
• Those leading NHS England’s implementation of ICS and primary care network
structures and development, health inequalities strategies, the NHS People Plan,
personalised care including shared decision-making, care co-ordination and social
prescribing, outpatient transformation, and work on public voice, collaboration with the
voluntary and community sector and volunteering should apply the multiple conditions
lens to inform their planning and assess delivery.
• The Care Quality Commission should apply this lens to its inspection and regulation
of individual providers as well as to its developing approach to taking a view of whole
systems.
• Health Education England, professional regulators and all involved in developing
and delivering clinical curricula should ensure that their planning and development of
the future workforce helps to meet these needs. Royal Colleges and professional
bodies should support their members through CPD mechanisms and resources to
make effective use of techniques such as care planning in the short-term.
The Richmond Group’s response and
recommendations
• Research funders should prioritise research into people’s holistic needs rather than
purely examining medical interventions.
• They should also ensure that the multiple conditions research agenda is driven by, and
that the evidence base includes, the voices and experiences of people living with health
inequity, with a particular focus on ethnic and other minority communities.
• Leaders in the voluntary and community sector should consider how their
organisations can respond to the report’s findings, as stand-alone organisations, in
collaboration with each other and in partnership with the public and commercial sectors.
https://richmondgroupofcharities.org.uk/taskforce-multiple-conditions
NTester@macmillan.org.uk
Thank you

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What matters to people with MLTC: key areas for innovation and research

  • 1. What matters to people with multiple long-term conditions (MLTC): key areas of opportunity for innovation and research to drive better care Natalie Owen & Leanne Dew – National Institute for Health Research
  • 2. What we mean when we talk about MLTC Two or more long-term non-communicable diseases (mental and physical health conditions); infectious diseases of long duration E.g. diabetes, dementia, depression Complex care needs E.g. children with Cerebral Palsy who have motor problems, visual impairment and learning difficulties.
  • 3. Close the gap – Inequalities in MLTC 3 The Lancet Healthy Longevity 2021 2e489-e497DOI: (10.1016/S2666-7568(21)00146-X) • Socioeconomic deprivation is strongly related to the acquisition of multiple long-term conditions, appearing some 10-15 years earlier in people living in the most deprived areas compared with the most affluent areas1 • In those aged 65-74, approximately 28% of people in the most deprived fifth of England have 4+ conditions, compared with 16% in the least-deprived fifth2 • In 2019, prevalence of age-standardised MLTC was highest in the north east and lowest in London. Individuals from areas of greater deprivation are more likely to be living with MLTC from an earlier age, with greater dependency on health-related benefits, increased healthcare utilisation and premature mortality3 1 Cassel et al. (2018) The epidemiology of multimorbidity in primary care: a retrospective cohort study. British Journal of General Practice, 68, e245-251. 2 New horizons in multimorbidity in older adults | Age and Ageing | Oxford Academic (oup.com)
  • 4. NIHR’s Strategic Framework for MLTC The NIHR will fund high quality research to provide an evidence base which: • Identifies and maps common clusters of disease and their trajectories among the population • Identifies the issues and outcomes that matter most to patients and carers and how they would like to see services configured to meet their needs • Delivers research that enables the health and social care system to take a patient-centred, whole person approach to the treatment and care of people with MLTC, including quality of life and well-being • Supports design and delivery of interventions to prevent patients progressing from one long-term condition to MLTC.
  • 5. Culture within the NIHR will be key Review funding processes (engagement, application, panel) to support applications. Engage with the NIHR community to provide opportunities to move into research on MLTC or include a MLTC lens explicitly in research projects. Engage with delivery/ implementation colleagues to ensure that MLTC are recognised as challenge, and that research is pulled through into practice. Foster a multi-disciplinary workforce through a new generation of researchers working beyond usual single disease specialisms. Support and enable team science. Promote a common terminology around MLTC that makes sense to funders, researchers, practitioners, patients and the public Ensure research/ trials do not unjustifiably exclude patients with MLTC; and encourage collection of appropriate & consistent outcomes measures
  • 6. What do people with MLTC want? Theme What will this look like? Facilitated by? To provide what patients want: Person-centred care and empowerment Interactions and partnerships within models of care Strong relationships and partnerships between patients and clinicians Patient-centred / recognise patient as expert Support with self-management of multiple conditions Shared records to facilitate shared decision making Technology Effective communication models ✔ Patient at heart of interaction ✔ Holistic care with shared planning & decision making ✔ Better information ✔ Clear packaging on medication ✔ Good listening and communication leading to understanding Mental and Emotional Wellbeing and Social Isolation Enabling bidirectional prevention of mental and physical health problems Integration of physical and mental health services Support when/where people need it Communication / Effective conversational models Education & training for clinicians in supporting MH as standard Better monitoring and effective and available interventions for supporting MH/PH conditions ✔ Better understanding ✔ GPs/clinicians who are confident and able to have conversations about MH ✔ MH services offered at regular and appropriate points ✔ Interventions to reduce social isolation and loneliness Better Understanding of Science Behind Multiple Long-Term Conditions Research: from linear pipeline to virtuous circle New research moving from single disease pathway approach - Incl. research on clusters Research which does not exclude people with MLTC Funders working across translation and disciplinary boundaries Industry partners Sustainable and attractive research career paths for MLTC researchers To understand: ✔ How conditions develop and interact; ✔ How conditions cluster; ✔ How treatments affect each other; ✔ Using quality of life measures alongside test results
  • 7. Landing the findings from this research and spreading innovation will need to take into account the context Patients and the public need to be at the heart
  • 8. Clusters – a route into making MLTC manageable Further building the community NIHR/MRC 2019 pump prime call £3m 5 projects NIHR/MRC SPF funding ‘tackling MLTC at scale’ £20m 6 Research Collaboratives NIHR/funding ‘AI for MLTC’ £23m
  • 9. Knowledge & Development – what problem are we trying to solve? What matters to people with MLTC? Review, Iteration & Development Discovery Science (Invention) Implementation Trials & Interventions (Evaluation) Polypharmacy - pharma and technology to promote adherence Decision-making tools for clinicians to assess progression of risk Information sharing apps to reduce time spent by patients/ carers telling multiple specialists their histories/treatment Wearables to aid information for self-management or support/nudge towards healthy behaviours Drug development or repurposing What do we learn from implementation that can either lead to iteration or feed back into discovery science or trials? E.g. who does it/doesn’t it work for and what’s next Scale and spread of successful interventions/ treatments Working with regulators Underpinned by data/digital Tech & devices (Innovation) AI or diagnostic technology Personalised medicine Academic / industry / NHS collaboration
  • 11. Multimorbidity and inequality – where do people’s experiences point us? Neil Tester Director, The Richmond Group of Charities @NTtweeting @RichmondGroup14
  • 12.
  • 13.
  • 15. Why the system can’t afford to ignore this challenge
  • 16.
  • 17. The Multiple Conditions Guidebook https://richmondgroupofcharities.org.uk/taskforce-multiple-conditions
  • 18.
  • 19. Focusing on health inequity • Racial and economic inequity and their impact on health are in the spotlight like never before • Increased profile for multiple conditions agenda – CMO annual report, White Paper on integration and innovation, Secretary of State’s speech on disparities • Right time to focus on the two-way relationship between multiple conditions and inequity
  • 20.
  • 22.
  • 23.
  • 24. How can policymakers and professionals help?
  • 25. The Richmond Group’s response and recommendations • NHS England should make a single senior leader clearly accountable for this agenda across its structures and programmes. • The Government should implement the key recommendation of Health Equity In England: The Marmot Review 10 Years On by developing a national strategy for action on the social determinants of health and their impact on health equity. • The Department for Health and Social Care should embed an explicit focus on multiple conditions into its priority to “improve, protect and level up the nation’s health, including through reducing health disparities” and build this into the NHS Mandate. • As NHS England reintroduces incentive payment structures suspended or changed during the pandemic emergency response, and as it establishes new financial flows to and within integrated care systems, it should ensure that it incentivises and resources organisational and clinical behaviours that help to arrest people’s progress from one to many conditions, and provide effective support for people already living with multiple conditions.
  • 26. The Richmond Group’s response and recommendations • Those leading NHS England’s implementation of ICS and primary care network structures and development, health inequalities strategies, the NHS People Plan, personalised care including shared decision-making, care co-ordination and social prescribing, outpatient transformation, and work on public voice, collaboration with the voluntary and community sector and volunteering should apply the multiple conditions lens to inform their planning and assess delivery. • The Care Quality Commission should apply this lens to its inspection and regulation of individual providers as well as to its developing approach to taking a view of whole systems. • Health Education England, professional regulators and all involved in developing and delivering clinical curricula should ensure that their planning and development of the future workforce helps to meet these needs. Royal Colleges and professional bodies should support their members through CPD mechanisms and resources to make effective use of techniques such as care planning in the short-term.
  • 27. The Richmond Group’s response and recommendations • Research funders should prioritise research into people’s holistic needs rather than purely examining medical interventions. • They should also ensure that the multiple conditions research agenda is driven by, and that the evidence base includes, the voices and experiences of people living with health inequity, with a particular focus on ethnic and other minority communities. • Leaders in the voluntary and community sector should consider how their organisations can respond to the report’s findings, as stand-alone organisations, in collaboration with each other and in partnership with the public and commercial sectors.