Summary of recommendations from major reports 1 National Guideline Centre. Multimorbidity: clinical assessment and management. London: National Institute for Health and Care Excellence; 2016. Think carefully about the risks and benefits, for people with

Summary of recommendations from major reports 1 National Guideline Centre. Multimorbidity: clinical assessment and management. London: National Institute for Health and Care Excellence; 2016. Think carefully about the risks and benefits, for people with multimorbidity, of individual treatments recommended in guidance for single health conditions. Discuss this with the patient alongside their preferences for care and treatment.1 Local health care provider level 1. Identify patients with multimorbidity or other complex health needs and prioritise them for pro-active, co-ordinated care. 2. Arrange regular comprehensive review of patients’ problems according to their individual circumstances. 3. Focus disease management on quality of life and function as well as disease control. 4. Tailor treatment recommendations to each individual’s priorities and situation. 5. Balance risks and benefits of treatment while seeking to reduce treatment burden (particularly from taking too many prescribed drugs). 6. Promote patient self-management: engage patients in decisions about their care; agree an individualised care plan and provide patients with support to follow it. 7. Provide better support for care givers. Regional or national level 8. Coordinate services to be delivered by a multidisciplinary team in the community, but with one clearly identified professional who has responsibility for coordinating care. This is likely to be the GP or another member of the primary health care team. 9. Develop clinical information systems which provide decision support and facilitate communication between care providers based on shared record systems . 10. Integrate health and social care services and physical and mental health care. 11. Train more generalists and organise systems around generalist primary care services rather than structuring services around specialisms and sub-specialisms. 12. Reform payment systems to encourage collaboration between providers and adequately compensate for complexity; remove systems which lead to inappropriate treatment or fragmentation of care. 13. Reprioritise research funding. There are major gaps in knowledge about the causes and determinants of multimorbidity, how to manage individual patients with multimorbidity and how to organise care for them. These are priorities for research. PolicyBristol – influencing policy through world-class research Policy Report 39: October 2018 Evidence has been summarised in a Cochrane systematic review1 , NICE guidelines on multimorbidity2 , and a recent report from the Academy of Medical Sciences3 . All of these reports acknowledge that there are major gaps in our knowledge about how best to manage people with multimorbidity. Multimorbidity refers to the existence of multiple medical conditions in a single individual. The issue is a growing global health concern but the available evidence on its causes, impact, and treatment is currently inadequate.3 Cochrane Review • Explored the evidence on the effectiveness of interventions to improve the management of multimorbidity in primary care and community settings • Most recent version (2016) included 18 high quality randomised controlled trials • Found no consistent evidence about interventions that improved clinical outcomes or reduced costs NICE Guidelines • Several recommendations made about identification and management of multimorbidity and frailty, including about the kind of care which should be provided • Strength of evidence to support most of these recommendations was low to moderate • Specific recommendation made that research was needed to examine different ways of organising general practice to better serve the needs of people with multimorbidity Academy of Medical Sciences • Takes a global perspective • Identified inconsistency in definitions of multimorbidity and recommended a consensus definition • Highlighted the need for more research into the causes and burden of multimorbidity; determinants and patterns of multimorbidity (including the most common clusters of conditions, their causes and effects); how to improve treatment for patients; and how to organise health care systems to address multimorbidity Given this limited evidence, we conducted the 3D trial, the largest evaluation to date of an approach to managing multimorbidity. The findings from the 3D trial were published in the Lancet in June 2018. 1 National Guideline Centre. Multimorbidity: clinical assessment and management. London: National Institute for Health and Care Excellence; 2016. 2 Smith SM, Wallace E, O’Dowd T, Fortin M. Interventions for improving outcomes in patients with multimorbidity in primary care and community settings. Cochrane Database of Systematic Reviews. 2016(3). DOI: 10.1002/14651858.CD006560.pub3 3 The Academy of Medical Sciences. Multimorbidity: a priority for global health research. London; 2018 April 2018. PolicyBristol – influencing policy through world-class research Policy Report 39: October 2018 The 3D approach: designed to reflect the international consensus that care for multimorbidity should be patient-centred, focus on quality-of-life, and promote self-management towards agreed goals.1 One named responsible GP Each patient was allocated one GP to be responsible for their care and was encouraged to see the same GP whenever possible Patients offered six-monthly comprehensive “3D” reviews, each consisting of two appointments which were longer than usual First appointment (nurse): agenda setting • Nurse asks patient about the health problems that bother them most • particularly asking about pain, function, quality of life • screening for depression and dementia • providing disease-specific care required, according to the individual patient’s combination of diseases • findings shared as a printed ‘agenda’ for the patient to discuss with their GP Regular ‘whole person’ review Second appointment (GP): agreeing a plan • GP considers the nurse and pharmacist reviews • discusses how well patient is getting on with their current treatment • discusses the patient’s needs and goals • agrees a collaborative health plan, which specifies how the patient and clinicians will address the agreed goals over the next six months • patient given a printed copy of the plan, including results of tests Pharmacist review of medication • Pharmacist reviews the patient’s medical records 1 Salisbury C, Man MS, Bower P, Guthrie B, Chaplin K, Gaunt DM, et al. Management of multimorbidity using a patient-centred care model: a pragmatic clusterrandomised trial of the 3D approach. Lancet. 2018;392(10141):41-50. DOI: 10.1016/S0140-6736(18)31308-4 PolicyBristol – influencing policy through world-class research Policy Report 39: October 2018 The 3D Trial Based on the existing evidence and international consensus on ‘best practice’, we believed that the patient-centred “3D” approach for patients with multimorbidity had the potential to improve patients’ quality of life, make their care more patient-centred and reduce their burden of illness and treatment compared with usual care. The aim of the 3D trial was to test whether these outcomes were actually improved. Trial methods: The 3D approach was evaluated in a randomised controlled trial in general practices in England and Scotland 16 practices provided the 3D approach while 17 practices continued usual care. 1,546 adult patients, each suffering from three or more different types of major long-term health conditions, took part. Measures of success included patients’ quality-oflife, experience of patient-centred care, illness burden and treatment burden. We also assessed use of health care services, including continuity of care, and costeffectiveness. We interviewed patients and staff to understand how 3D worked, and how it could be improved. Findings: At the outset of the trial, patients had poor quality of life with a third of them experiencing depression as well as multiple physical health problems. Many also reported problems with the organisation of their care. After 15 months follow-up there was no significant difference on average between patients in the practices providing the 3D approach or usual care in terms of quality-of-life, illness burden or treatment burden. However, patients in practices providing the 3D approach reported significant improvements in patientcentred care. They felt more able to discuss the problems that were most important to them, their care was better co-ordinated, and they were more satisfied with their overall health care. The cost of providing the 3D approach was not significantly higher than the cost of usual care. “So the great thing about this is that they’re looking at you as a whole being and taking everything into account and that is very new” [3D trial participant]1 Interpretation: The 3D approach improved patients’ experience of patient-centred care but not their health outcomes. It is arguable that improved patient-centred care is itself sufficient reason to roll out the 3D approach more widely, given that it is not significantly more expensive. From the interviews with patients and staff it was clear that most patients preferred the 3D approach, but it took time for practices to adapt to the new way of working particularly in a system that was organised and incentivised through the GP payment system to provide ‘disease-focused’ care. The effectiveness of the 3D approach might improve over time and if it became normal practice. Funding: National Institute for Health Research. The views and opinions expressed in this report are those of the authors and do not necessarily reflect those of the NIHR, the NHS or the Department of Health. 1 Salisbury C, Man MS, Bower P, Guthrie B, Chaplin K, Gaunt DM, et al. Management of multimorbidity using a patient-centred care model: a pragmatic cluster-randomised trial of the 3D approach. Lancet. 2018;392(10141):41-50. DOI: 10.1016/S0140-6736(18)31308-4 PolicyBristol – influencing policy through world-class research Policy Report 39: October 2018 Implications for health policy The challenge for health care More people in the UK are living with multimorbidity. This impacts on the health and well-being of patients, and places great pressure on the NHS. Current models of care, largely focused on the care of individual diseases such as diabetes or heart disease, are becoming increasingly expensive and yet are failing to meet patients’ needs for whole person, patient-centred care. Does research point to a solution? The problems caused by multimorbidity are clear, but the solutions less so. There are many gaps in current knowledge, highlighted in several recent national and international reports. Even though the volume of evidence from high quality research is limited, based on the 3D trial and previous studies it seems unlikely that currently proposed models to improve care for multimorbidity will lead to rapid improvements in patients’ quality of life or health outcomes.1,2 The difficulty of improving quality of life in people with multimorbidity This may be because the problems that most affect the quality of life of patients with multimorbidity are complex and deep-seated. Quality of life, including health, is affected by factors such as income, employment, housing and education as well as health care. Solving the patient’s problems may require actions beyond the current remit or vision for the health service, for example requiring social care (although health services may have a role in referring patients to this). There are few new approaches to providing health care for long-term conditions which have been shown to improve quality of life even for patients with single conditions, never mind in people with complex multimorbidity. For example, many innovations which are currently widely promoted (such as in the field of digital health) have not been shown to improve patient’s quality of life in randomised controlled trials. What could be done to make a difference? The lack of evidence from research for benefit in terms of improved quality of life does not necessarily undermine the consensus recommendations. These recommendations have wide support. To really make a difference to the health and wellbeing of patients with multimorbidity, interventions will probably need to be more intensive and provided over a longer period than any of the evaluations which have been conducted so far. They will also probably have to be introduced at a whole system level, since meaningful change is likely to involve changes in the ways in which general practice, hospitals and social care work together. There is also likely to be an increasingly important role for voluntary and community services. Moving towards a health care system designed to meet the needs of large numbers of people with multimorbidity will require radical re-organisation involving a rebalancing of resources towards high quality health and social care provided in the community, with a greater role for specialists in advising, supporting and monitoring care provided outside hospitals. These are major changes which will take time. In the meantime, the 3D approach represents a fairly simple, low cost intervention which demonstrably improves the care of patients whose needs are not being met by current services. Although improving quality of life and health outcomes for patients with multimorbidity is clearly challenging, there is good evidence from the recent 3D trial1 as well as from earlier studies2 that new approaches can lead to improvements in the way in which care is provided and patients with multimorbidity experience their health care. Providing a patient-centred rather than diseasefocused approach leads to care which is more joined up, respects patients’ wishes and priorities, and is more attuned to their perceived needs. This may be a worthwhile end in itself. 1 Salisbury C, Man MS, Bower P, Guthrie B, Chaplin K, Gaunt DM, et al. Management of multimorbidity using a patient-centred care model: a pragmatic cluster-randomised trial of the 3D approach. Lancet. 2018;392(10141):41-50. DOI: 10.1016/S0140-6736(18)31308-4 2 Smith SM, Soubhi H, Fortin M, Hudon C, O’Dowd T. Managing patients with multimorbidity: systematic review of interventions in primary care and community settings BMJ 2012; 345 :e5205. DOI: 10.1136/bmj.e5205 PolicyBristol – influencing policy through world-class research Policy Report 39: October 2018 Policy recommendations • Promote patient-centred approaches to the management of multimorbidity in primary care, such as the 3D model. This will require training, support and changes in incentives. • Develop and evaluate new approaches to managing patients with multimorbidity within hospitals. • Explore new models of integration of primary and community care, hospital care and social care which enable better co-ordination and support for people with multimorbidity. This is likely to require substantial changes in commissioning and funding mechanisms, and a rebalancing of resources. These aims are being pursued by ‘sustainability and transformation partnerships’ and in some areas by ‘integrated care systems’.1 These should give high priority to improving care for patients with multimorbidity, and it will be important to learn lessons from the experience of pilot sites. • Better integration of primary, secondary and social care will not come about through organisational change alone – it will also require major cultural change for care providers and managers. This is likely to require changes to professional education, training and regulation. • Improving care for the large and increasing number of people with multimorbidity will require a stepchange in engaging people and enabling them to manage their own health and long-term conditions. This will require co-ordinated action across many aspects of government and public life, including not only health policy but also education, welfare, transport, and policies which impact on public health issues such as healthy eating, exercise, smoking and alcohol consumption. • Several of the major chronic diseases affecting people with multimorbidity have common risk factors, such as smoking, obesity and lack of physical activity. The benefits of addressing these lifestyle problems will be magnified through preventing many different diseases. 1 Ham C, Making sense of integrated care systems, integrated care partnerships and accountable care organisations in the NHS in England. King’s Fund. PolicyBristol – influencing policy through world-class research Policy Report 39: October 2018 Further reading 1. Salisbury C, Man MS, Bower P, Guthrie B, Chaplin K, Gaunt DM, et al. Management of multimorbidity using a patient-centred care model: a pragmatic cluster-randomised trial of the 3D approach. Lancet. 2018. 392:41-50. DOI: 10.1016/S0140-6736(18)31308-4 2. The Academy of Medical Sciences. Multimorbidity: a priority for global health research. London; 2018 April 2018. 3. The Commonwealth Fund International Experts Working Group on Patients with Complex Needs. Designing a High-Performing Health Care System for Patients with Complex Needs: Ten Recommendations for Policymakers. New York; 2017 September 2017. 4. Smith SM, Wallace E, O’Dowd T, Fortin M. Interventions for improving outcomes in patients with multimorbidity in primary care and community settings. Cochrane Database of Systematic Reviews. 2016(3). DOI: 10.1002/14651858.CD006560.pub3 5. National Guideline Centre. Multimorbidity: clinical assessment and management. London: National Institute for Health and Care Excellence; 2016. 6. Baker MJ, Jeffers H. Responding to the needs of patients with multimorbidity. A vision for general practice. London, England: Royal College of General Practitioners; 2016. 7. Wallace E, Salisbury C, Guthrie B, Lewis C, Fahey T, Smith SM. Managing patients with multimorbidity in primary care. BMJ. 2015;350:h176. DOI: 10.1136/bmj.h176 8. Mercer SW, Salisbury C, Fortin M. ABC of Multimorbidity. Chichester: John Wiley & Sons Ltd, 2014. 50 p. ISBN: 978-1-118-38388-9 9. U.S. Department of Health and Human Services. Multiple Chronic Conditions—A Strategic Framework: Optimum Health and Quality of Life for Individuals with Multiple Chronic Conditions. Washington, DC.; 2010.

How should health policy respond to the growing challenge of multimorbidity? We need patient-centred care, with more emphasis on generalist rather than specialist care and better integration between general practice, hospitals and social care PolicyBrist

How should health policy respond to the growing challenge of multimorbidity? We need patient-centred care, with more emphasis on generalist rather than specialist care and better integration between general practice, hospitals and social care PolicyBristol – influencing policy through world-class research Policy Report 39: October 2018 Summary There is growing awareness internationally of the increasing number of people living with multiple long-term health condition, known as multimorbidity. Health services, including the NHS, need to adapt to address this challenge. People with multimorbidity are more likely to experience poor quality of life and poor physical and mental health. They use both general practice and hospital services far more than often than the general population. Treatment itself can be an additional burden if they need to take numerous prescribed drugs and attend frequent health care appointments. More and more people are living with multimorbidity. A major driver of this is that people are living longer. Multimorbidity poses major challenges for health care systems around the world, which are largely designed to manage individual diseases and episodes of illness. These need to be re-orientated towards providing care for people who have several long-standing health conditions at the same time, many of which are manageable but not curable. There will need to be a new relationship between patients and health care professionals, which will engage patients more in managing their health conditions themselves. Health care services need to invest in better generalist care and become less focussed on care for single diseases, and closer integration of health and social care will be necessary. What is multimorbidity? Multimorbidity is usually defined as the existence of two or more long term health conditions in the same individual.1 Many of these conditions are not curable but can be managed to help reduce adverse symptoms, slow deterioration, and enable people to adapt their lives to cope better. Managing long-term conditions well requires actions from both the patient and the health care system. How common is multimorbidity? Determining the number of people affected is difficult because it depends on the number of health conditions included in the definition of multimorbidity. However it is clear that the prevalence of multimorbidity increases with age and is higher in less affluent areas.2 A large Scottish study, examining 40 significant long-term health conditions, found that two out of three people aged 65 years or over had two or more of these conditions, rising to more than eight out of ten of those aged over 85.3 Multimorbidity is therefore the norm for older people in developed countries such as the UK. 100 90 80 70 60 50 40 30 20 10 0 Patients (%) Age Group (years) 0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85+ 0 1 2 3 4 5 6 7 8+ 4 5 6 7 8+ Number of conditions Zero conditions 1 condition 2 3 Figure 1: Number of chronic disorders by age-group. (adapted from Barnett et al 2012)3 However, multimorbidity is not just a problem of the elderly. Because there are more middle-aged than elderly people in the population, there are actually more people with multimorbidity aged under rather than over 65 years old.4 The number of people in the population with long-term health conditions such as diabetes, heart disease and dementia is rising for several reasons. These include the ageing population, increases in obesity, and improvements in medical care so that people survive longer with conditions that in the past would have been fatal. As the prevalence of most long-term conditions increases, so does the number of people living with multimorbidity. Between 2015 and 2035 the number of older people with four or more long term conditions will double, and a third of these people will have mental health problems such as depression, or dementia or cognitive impairment. 4 1 The Academy of Medical Sciences. Multimorbidity: a priority for global health research. London; 2018 April 2018. 2 Violan C, Foguet-Boreu Q, Flores-Mateo G, Salisbury C, Blom J, Freitag M, et al. Prevalence, determinants and patterns of multimorbidity in primary care: a systematic review of observational studies. PLoS One 2014; 9(7): e102149. DOI: 10.1371/journal.pone.0102149 3 Barnett K, Mercer SW, Norbury M, Watt G, Wyke S, Guthrie B. Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. Lancet 2012; 380(9836): 37-43. DOI: 10.1016/S0140-6736(12)60240-2 4 Kingston A, Robinson L, Booth H, Knapp M, Jagger C for the MODEM project. Projections of multi-morbidity in the older population in England to 2035: estimates from the Population Ageing and Care Simulation (PACSim) model, Age and Ageing, 47 (3) 374–380. DOI: 10.1093/ageing/afx201 PolicyBristol – influencing policy through world-class research Policy Report 39: October 2018 Why is multimorbidity a problem for patients? Compared with people with single health problems, people with multimorbidity are more likely to have a reduced quality of life, impaired function, worse general health and an increased risk of premature death. People with multiple physical health problems are more likely have to poor mental health, and this in turn makes them less likely to manage their physical health problems well. People with multimorbidity are often prescribed large numbers of drugs, expected to make many changes to life-style and to attend numerous health care appointments. Therefore, treatment itself can be a major burden for patients, in addition to the burden of being ill. Because patients with multimorbidity receive care from a number of different organisations and individual clinicians they often experience poor continuity of care. They can feel that their care is not joined-up since different clinicians often only focus on one aspect of their problems and no-one treats them as a ‘whole person’. That is because care is often disease-focused rather than patient-centred. “I always feel you’re better going to the same doctor to see him about yourself, instead of explaining to the next doctor or another doctor which has not been seeing you about it.”1 What is the problem for the NHS? People with multimorbidity account for a disproportionately high number of consultations in general practice and their treatment is expensive because they are likely to be prescribed numerous drugs. 10 8 6 6 4 2 14 12 18-24 25-34 35-44 45-54 55-64 65-74 75-84 85+ 10 8 6 6 4 14 12 Annual consultation rate multimorbid not multimorbid Figure 2 Figure 2: Annual general practice consultation rate by age and multimorbidity status2 People with multimorbidity also have high rates of emergency hospital admissions and attendance at outpatient appointments. In one study, only 10% of patients had four or more physical health conditions, but these patients accounted for more than a third of all unplanned admissions to hospital and almost half of potentially preventable unplanned admissions.3 0 500 400 300 200 100 600 0 1 2 3 4 5 6 7 8 9 Annual admission rate per 1000 people Number of conditions Potentially preventable admissions Other emergency admissions 10+ Figure 3 31 51 74 115 151 200 242 318 342 20 479 5 9 14 21 34 47 64 85 100 3 151 Figure 3: Rates of hospital admissions in patients with multimorbidity3 1 Salisbury C, Man MS, Bower P, Guthrie B, Chaplin K, Gaunt DM, et al. Management of multimorbidity using a patient-centred care model: a pragmatic cluster-randomised trial of the 3D approach. Lancet. 2018. 392:41-50. DOI: 10.1016/S0140-6736(18)31308-4 2 Salisbury C, Johnson LR, Purdy S, Valderas JM, Montgomery AA. Epidemiology and impact of multimorbidity in primary care: a retrospective cohort study. Br J Gen Pract. 2011;61(582):e12-e21. DOI: 10.3399/bjgp11X548929 3 Payne R.A. Abel G.A Guthrie B., Mercer S.W. The effect of physical multimorbidity, mental health conditions and socioeconomic deprivation on unplanned admissions to hospital: a retrospective cohort study CMAJ Feb 2013, cmaj.121349; DOI: 10.1503/cmaj.121349 PolicyBristol – influencing policy through world-class research Policy Report 39: October 2018 There is an almost exponential relationship between the number of health conditions affecting an individual and their use of health care resources.1 In the US, it is estimated that people with multimorbidity account for more than two-thirds of all health care spending. The economic impact of increasing multimorbidity in the population is therefore very substantial. We need to consider new ways of providing health care which more effectively support self-care, reduce inefficiencies and reduce reliance on expensive hospital care. Medicine in all developed countries is organised around specialities which are defined by disease or body system. The care experienced by patients in hospital is to some extent dictated by which speciality deals with the initial cause of admission. But since most hospital admissions involve people with long-term conditions, and most of these patients have multimorbidity, better generalist care is needed to ensure appropriate care, and a timely and well co-ordinated handover to care outside hospital. Similarly, specialists in out-patient departments understandably tend to focus on problems within their domain of expertise, but this can mean that a patient’s other problems get less attention or that they have to be referred between different specialists. “There is a weakness on co-morbidity. The computer can’t cope with two concepts in one bite. I’m not worried about it, but what it means in practice is that a patient with co-morbidity gets maybe three or four letters a year as opposed to one letter a year. Because they get the letter for heart disease and then they get the letter for asthma, then they get the letter for diabetes” (GP 09)2 The focus on single diseases impacts general practice as well as hospitals. Within the UK, the care of long term conditions is increasingly organised around care pathways, protocols and treatment guidelines for each specific disease. However, this approach is problematic for people with multimorbidity. “so you have a guy with ischaemic heart disease who automatically has to go on five agents and then he’s got diabetes, he’s got another three agents and if you were to take each of the conditions, not necessarily diseases, maybe just lipidaemia or whatever, and put them on the best management protocol for that particular condition, you know, they’re straight away on 20 different agents, and if you stop any of those then you’re not following the guidelines for each of those.” (GP6)3 Most treatment guidelines have been developed for less complex people with single health conditions and their recommendations may not be applicable to people with multimorbidity. If health professionals try to follow several different disease-specific protocols for the same patient, this may lead to advice which is burdensome, contradictory or inappropriate in the light of the patient’s other conditions. “Somebody with diabetes, you encourage them to exercise, [but] maybe if they’ve got a respiratory condition, it stops them from doing that. So sometimes your advice conflicts, you know, when you’ve got multiple problems.” PN 2 (27yrs qualified: Practice Nurse)4 1 Lehnert T, et al. (2011). Health Care Utilization and Costs of Elderly Persons with Multiple Chronic Conditions. Medical Care Research and Review 68(4), 387–420. DOI: 10.1177/1077558711399580 2 Peter Bower, Wendy Macdonald, Elaine Harkness, Linda Gask, Tony Kendrick, Jose M Valderas, Chris Dickens, Tom Blakeman, Bonnie Sibbald; Multimorbidity, service organization and clinical decision making in primary care: a qualitative study, Family Practice, Volume 28, Issue 5, 1 October 2011, Pages 579–587. DOI: 10.1093/fampra/cmr018 3 Smith SM, O’Kelly S, O’Dowd T. GPs’ and pharmacists’ experiences of managing multimorbidity: a ‘Pandora’s box’. Br J Gen Pract. 2010. 60(576):285-94. DOI: 10.3399/bjgp10X514756 4 Coventry PA, Fisher L, Kenning C, Bee P, Bower P. Capacity, responsibility, and motivation: a critical qualitative evaluation of patient and practitioner views about barriers to self-management in people with multimorbidity. ©BMC Health Serv Res. Oct 31 2014;14(1):536. DOI: 10.1186/s12913-014-0536-y Published under licence CC BY 2.0. PolicyBristol – influencing policy through world-class research Policy Report 39: October 2018 What are the solutions? Several national and international bodies have recognised these problems and have published reports about multimorbidity (see Further Reading). Although these reports have different purposes and audiences, there is a lot of overlap in their recommendations. Summary of recommendations from major reports 1 National Guideline Centre. Multimorbidity: clinical assessment and management. London: National Institute for Health and Care Excellence; 2016. Think carefully about the risks and benefits, for people with multimorbidity, of individual treatments recommended in guidance for single health conditions. Discuss this with the patient alongside their preferences for care and treatment.1

Person-centred care: from ideas to action Health Foundation summary and analysis October 2014 For more information and to download or order the full report, please visit: www.health.org.uk/pccideasaction 2 THE HEALTH FOUNDATION In 2013, the Health Foundat

Person-centred care: from ideas to action Health Foundation summary and analysis October 2014 For more information and to download or order the full report, please visit: www.health.org.uk/pccideasaction 2 THE HEALTH FOUNDATION In 2013, the Health Foundation commissioned a review to synthesise current knowledge on shared decision making and self-management support and how to make these an integral feature of health care. The full research report, Person-centred care: from ideas to action, draws together and analyses the research, policy, empirical evidence and evidence from programmes. There is also an accompanying learning report, Ideas into action: person-centred care in practice, which focuses on how to implement change locally. To download and order these reports, please visit www.health.org.uk/pccideasaction This ‘In brief ’ looks at the implications of the research for policy makers and those responsible for providing strategic direction to assist them in moving person-centred care and support from an aspiration to an actuality. The issues considered in document are relevant in the four UK countries. To illustrate our analysis, we have drawn upon the specific roles of those responsible for the strategic oversight, direction and regulation of the health care system in England. Putting aspirations into practice The gap between commitment and practice There is increasing and welcome recognition that people who use health services can no longer be viewed as passive recipients of care but rather are active coproducers of their own health, including through decisions about whether and what treatments to accept or by taking on day-to-day management of their health and care. This recognition is manifesting itself in a growing alignment between government, clinical and managerial leaders, patient groups and commentators across the four nations of the UK, behind the aspiration of a more person-centred health service (see Figure 1). Supporting this aspiration is a growing empirical and practical evidence base – from the work of the Health Foundation and others – on the impact of shared decision making and self-management support, what gets in the way and what needs to be in place to enable them to become normal practice. Yet there remains a stubborn gap between the commitment to person-centred care and support and the reality on the ground: – Only around half of people are involved as much as they want to be in decisions about their health care, a figure that has remained stubbornly constant for the past 10 years. – Only 3% of people living with a long-term condition report involvement in their care plan. – There are fewer places on self-management programmes available each year than there are people newly diagnosed with a long-term condition. Why does this gap persist? It is perhaps not surprising that the gap between commitment and practice exists: person-centred care and support is still novel. It is multifaceted (as shown by Figure 1). It involves, as does any change, asking individuals to change their roles and their behaviours and organisations to change their culture. It is one part of a complex NHS system, where energy is often drawn towards structural change at the expense of quality improvement. It is one of many priorities of professional and system stewards and regulators who have many other priorities on their plate which are more intuitively part of their history and expertise.1 The research draws our attention to a number of barriers, discussed below, that have held back shared decision making and self-management support from becoming ‘business as usual’. Paying attention to these points can inform a more coherent and effective approach to implementing person-centred care and support. 1 By system and professional stewards we mean those public bodies that are responsible for the strategic oversight, direction and regulation of the health care system and the development of health care professionals. This includes central government departments, their arm’s length bodies, royal colleges and similar bodies. Figure 1: What is a person-centred health system? We can discern four principles of person-centred care and support. P e rson is treated with... dignity, compassion, respe ct Care is... enabling Care is... coordinated Care is... personalised The four principles of person-centred care Where would we start if care and support were person-centred? – We would start by understanding what matters to the patient – Every encounter would be one which embraces the patient as person rather than object – We would explore their health beliefs, motivations, knowledge, skills, learning styles and familial and social context as well as according to their disease and demography – Interventions would be targeted and tailored based on these insights to support people where they are at to achieve their goals – The NHS will measure: • how far people’s preferences are supported; • how confident and able people are to manage their long-term conditions better; • the extent to which the NHS has been successful, working in partnership with others such as social care, housing and the voluntary sector, supporting people to achieve their outcomes. Shared decision making and self-management support are core activities that support the translation of these principles into practice. In particular, they are enabling activities that support people to have agency over their health and decisions about their health care. IN BRIEF: PERSON-CENTRED CARE: FROM IDEAS TO ACTION 3 – Only 3% of people living with a long-term condition report involvement in their care plan. – There are fewer places on self-management programmes available each year than there are people newly diagnosed with a long-term condition. Why does this gap persist? It is perhaps not surprising that the gap between commitment and practice exists: person-centred care and support is still novel. It is multifaceted (as shown by Figure 1). It involves, as does any change, asking individuals to change their roles and their behaviours and organisations to change their culture. It is one part of a complex NHS system, where energy is often drawn towards structural change at the expense of quality improvement. It is one of many priorities of professional and system stewards and regulators who have many other priorities on their plate which are more intuitively part of their history and expertise.1 The research draws our attention to a number of barriers, discussed below, that have held back shared decision making and self-management support from becoming ‘business as usual’. Paying attention to these points can inform a more coherent and effective approach to implementing person-centred care and support. 1 By system and professional stewards we mean those public bodies that are responsible for the strategic oversight, direction and regulation of the health care system and the development of health care professionals. This includes central government departments, their arm’s length bodies, royal colleges and similar bodies. Figure 1: What is a person-centred health system? We can discern four principles of person-centred care and support. P e rson is treated with... dignity, compassion, respe ct Care is... enabling Care is... coordinated Care is... personalised The four principles of person-centred care Where would we start if care and support were person-centred? – We would start by understanding what matters to the patient – Every encounter would be one which embraces the patient as person rather than object – We would explore their health beliefs, motivations, knowledge, skills, learning styles and familial and social context as well as according to their disease and demography – Interventions would be targeted and tailored based on these insights to support people where they are at to achieve their goals – The NHS will measure: • how far people’s preferences are supported; • how confident and able people are to manage their long-term conditions better; • the extent to which the NHS has been successful, working in partnership with others such as social care, housing and the voluntary sector, supporting people to achieve their outcomes. Shared decision making and self-management support are core activities that support the translation of these principles into practice. In particular, they are enabling activities that support people to have agency over their health and decisions about their health care.

How to strengthen patient-centredness in caring for people with multimorbidity in Europe? [Internet] Show details Contents Search term Policy brief Go to: Introduction Box Icon Box 1 What is patient-centred care? Box Icon Box 2 What is integrated care

How to strengthen patient-centredness in caring for people with multimorbidity in Europe? [Internet]

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Policy brief

Introduction

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Box 1

What is patient-centred care?

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Box 2

What is integrated care?

The disease-specific way in which care is organized in European countries is not responsive to the needs of those who have multiple chronic conditions at the same time (multimorbidity). An estimated 50 million people in Europe have multimorbidity and this number is expected to increase in the future because of improvements in the early detection of chronic diseases and the development of increasingly effective treatments leading to higher survival rates [9], besides ageing, lifestyle and other factors. European health care systems are not responsive to the care needs of people with multiple chronic conditions, because care is organized and delivered in a fragmented and disease-orientated way. As a consequence, people with multimorbidity often receive incomplete, inefficient and ineffective care, which could lead to their receiving conflicting medical advice and to preventable hospitalizations [1012]. Given the increasing number of people with multimorbidity, the discrepancy between the care needs of these patients and the way in which their care is organized is becoming increasingly visible.

People with multimorbidity need care that is patient-centred (see Box 1). Patient-centred care is intertwined with integrated care (see Box 2). Establishing integrated care is a global strategy of the World Health Organization (WHO) [13,14], because it is an effective way of improving the quality of care while also making more efficient use of resources. This is especially the case for those who have multiple chronic conditions [15].

This policy brief focuses on how patient-centred care for people with multimorbidity can be strengthened and supported by policy and practice. Policy-makers who aim to put patient-centred care for people with multimorbidity on the agenda, as well as those who aim to further develop integrated care for them, can use this brief to support their work.

The policy issue: how to strengthen patient-centred care for people with multimorbidity

European countries recognize the challenge of providing care that meets the needs of people with multimorbidity and are searching for ways to make their health care systems more responsive to their needs. The adoption of a patient-centred approach is considered by many to be key to providing good quality care for people with multimorbidity [5,16], because it takes the needs, preferences and values of patients as a starting point in deciding on treatments and care, as opposed to desired disease-specific health outcomes. The latter are currently an important driver for treatment and care decisions, but are often not relevant or feasible for people with multimorbidity. Although patient-centred care is recognized as a precondition for good quality care, various challenges occur when giving shape to patient-centred care for people with multimorbidity.

Technical challenges include

  • Assessing patient-relevant outcomes to guide clinical decisions.
  • Tailoring care to the needs of patients.
  • Establishing structural collaborations between care professionals across and within sectors.
  • Establishing structural coordination of care from various care professionals.
  • Information-sharing among care professionals and between care professionals and patients and informal carers.

The technical challenges for collaboration between care professionals and the coordination of care are important, because people with multimorbidity often need care from multiple providers and various disciplines. Good collaboration between care professionals might reduce contradictory treatment and care decisions. Furthermore, it might enhance treatment and care decisions in line with the patient’s health goals while taking the consequences of other conditions and the treatment of these into account. Good coordination of care is important for making care more efficient and less burdensome for patients. However, besides technical challenges, there are policy challenges in the organization of patient-centred care for people with multimorbidity.

Policy challenges include

  • Knowledge gaps in effective strategies to establish patient-centred care.
  • Lack of clearly defined measurable goals for patient-centred care.
  • Knowledge gaps in effective financing methods that may facilitate the integration of care or collaboration between different disciplines and sectors.
  • Lack of management support to establish changes in care organizations.

In order to facilitate patient-centred care, policies should be in place that support changes at various levels of the care delivery process [5]. However, the development of evidence-informed policies to strengthen patient-centred care is difficult, because patient-centredness is a broad and multidimensional concept and has been operationalized in different ways. This policy brief therefore addresses the following questions:

  1. What are the key elements of patient-centred care for people with multimorbidity?
  2. What are the benefits of patient-centred care for people with multimorbidity?
  3. How can key elements of patient-centred care for people with multimoribidty be addressed in strategies to strengthen patient-centred care?
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Box 3

Methods.

Findings

This policy brief provides insight into key elements of patient-centred care for people with multimorbidity, the benefits of patient-centred care and possible strategies to support patient-centred care.

Key elements of patient-centred care for people with multimorbidity

Although patient-centred care is relevant for all patients, it is especially relevant for people with multimorbidity. Furthermore, when taking multimorbidity care as the point of departure, patient-centred care may actually go beyond what is generally discussed in the scientific literature, which is most often concerned with single-diseases and short-term care. The key elements of patient-centred care for people with multimorbidity are summarized in Table 1 [5,1724]. These elements can be grouped into three categories: 1) those related to responding to patients’ preferences, needs, values and resources; 2) those related to the involvement of informal carers; and 3) those related to the integration and coordination of care services.

Table 1. Key elements of patient-centred care for people with multimorbidity.

Table 1

Key elements of patient-centred care for people with multimorbidity.

1. Customizing care to the needs, preferences, values and resources of patients

Customizing care to the needs, preferences, values and resources of patients is central to a patient-centred care approach [17,25]. In current health care systems in Europe, the disease-orientated (or ‘what is the matter’) approach is most often the point of departure when care is provided. Moreover, evidence-based practice, often directed at improving clinical outcomes, is the usual answer with this approach [26]. However, this type of care will not always lead to the treatments and outcomes that are most responsive to the needs of people with multimorbidity. For people with multimorbidity, the focus on evidence-based practice and on clinical outcomes might not be responsive to their needs for two reasons: 1) the evidence that certain treatment options are effective in patients with multimorbidity is often lacking; 2) clinical outcomes might be irrelevant or less relevant for these patients.

The challenges of using single-disease, evidence-based guidelines for people with multimorbidity, a population that has been rarely represented in the efficacy trials underlying guideline recommendations and is vulnerable to the risks of polypharmacy, are increasingly being recognized [2729]. Clinical practice guidelines that focus on the management of a single disease can be impractical, irrelevant or even harmful for people with multimorbidity [30]. Moreover, patients might attach great value to the ability to walk pain-free or to be able to get dressed without help, but little value to clinical outcomes, such as having good average blood glucose levels. In other words, the outcomes of care that people with multimorbidity consider to be relevant may be very different from the outcomes considered to be relevant by care professionals. Therefore, the ‘what matters to you’ (or goal-orientated) approach is a more suitable point of departure than the ‘what is the matter’ approach in care for people with multimorbidity, because it transcends specific diseases and focuses on the needs and goals of individuals (patient-relevant outcomes) rather than clinical outcomes. Patient-relevant or goal-orientated patient care outcomes can include physical functioning, severity of symptoms, quality of life, role and social functioning, and emotional status [31,32].

Patient-centred care for people with multimorbidity therefore requires a shift in thinking and acting in terms of clinical outcomes to thinking and acting in terms of patient-relevant outcomes. The outcomes that patients want to achieve should guide decisions on treatments. When patient-relevant outcomes have been identified, treatment options to achieve these outcomes can be discussed [33]. Patients with multimorbidity are likely to be confronted with ‘preference-sensitive’ decisions, which include therapy that may improve one condition but make another worse or may lead to long-term benefits but to short-term harm [20,30]. These ‘preference-sensitive’ decision moments should be recognized by care professionals [30] and the benefits and harms of treatment options should be made explicit to make sure that patients understand the balance between the potential benefits and harms of treatments [30]. After sufficiently informing patients, their preferences with respect to treatment and care options can be assessed and could, in combination with clinical feasibility, inform treatment choices [30,34]. Explicitly inviting patients (and/or their informal carers) to participate in the decision-making process and encouraging them to express their goals and concerns, as well as to ask questions concerning their care and treatment, are all important elements of patient-centred care [35].

Additionally, to customize care to the needs of patients, it is not only important to take the patients’ preferred outcomes and treatment options into account when making treatment decisions; it is also important to take into account their resources, as well as their health and personal histories [13,25]. Patients’ resources include, for example, their self-efficacy, literacy skills and options for social support. Patients with strong self-efficacy and a strong social network might be more able to perform self-management tasks than those with low self-efficacy and a weak social network. These patients might need more support from care professionals.

2. Involving informal carers as co-clients and co-care providers

Many patients with multimorbidity receive support from their family or friends (informal carers) in their care, which mainly occurs outside the health care setting. When a person becomes chronically ill, this not only affects their own life but also that of their family and friends [36]. Often, the partner and/or children will support their loved one in coping with his or her chronic conditions, fulfilling the role of caregiver [37]. At the same time, the chronic conditions can impact on relationships between the person with the conditions and their partner and/or children. It can be burdensome for informal carers to take care of their loved ones on a long-term basis [37]. Furthermore, multimorbidity is common among elderly people and they frequently receive support from their elderly partners [38,39]. Care professionals should be aware of these issues and should recognize informal carers as a group with emotional support needs and care needs of their own. Informal carers have a double role as co-care provider and co-client. They stand between the needs, preferences and values of the patient on the one hand and the integration and coordination of care on the other. Informal carers need to be adequately informed, involved in treatment decision-making, given emotional support and involved in the coordination of care between various care professionals [37].

3. Integration and coordination of care

People with multimorbidity often need care from professionals from various disciplines. Receiving care from different care professionals that are all working to their own disease-specific treatment plans can be burdensome for patients, because they have to follow different treatment regimens and may need to visit various specialists on a regular basis [27]. In some cases, it can even introduce health risks for patients when they receive conflicting treatments from different providers [27]. Collaboration between the various disciplines and care professionals, as well as good coordination of care, are therefore of great importance and key elements in patient-centred care for people with multimorbidity [40]. The creation of effective links between primary and specialist services is important to enable more effective diagnosis, faster referrals and smoother care transitions [14]. Coordination of care not only concerns coordination across care professionals but also the coordinating of care over time [41]; for example, through improved information flows and establishing long-term collaborations between providers [41].

People with multimorbidity may not need only health care but may also require social care, such as support at work or at home. Multimorbidity does not only impact a person’s health but also affects their ability to function in society, including being in the workforce. This means that the social domain should also be part of the integration and coordination of care: care should be integrated across sectors. This could, for example, be done by including social workers as key members of primary care teams [2,14].

In order to coordinate care from multiple care professionals and disciplines, it may be effective to appoint one person as the care coordinator [41]. The general practitioner (GP) could take up this role or alternatively a new function could be created. The integration of care may require new functions that go beyond a single-disease focus [41].

Benefits of patient-centred care for people with multimorbidity

Some perceive patient-centred care as an intrinsically good way of providing care, regardless of whether it achieves other instrumental or pragmatic goals, because it fulfils the obligation of health care professionals to place the interests of the patient above everything else [42]. Research on the effects of patient-centred care is scarce and, to our knowledge, not available in the context of multimorbidity. Nevertheless, studies on patient-centred care in general suggest that it has beneficial outcomes; for example, in terms of patient satisfaction with care, improved self-management and the more efficient use of resources [21,31,32]. There are also many other potential benefits described in the literature (see Table 2) [14,24].

Table 2. (Potential) benefits of patient-centred care.

Table 2

(Potential) benefits of patient-centred care.

Strategies to strengthen patient-centred care for people with multimorbidity

In this section, patient-centred care is translated into strategies, in part based on the WHO global strategy for integrated and people-centred care (2015) [13,14] and on insights from the review of international scientific literature [24,31,32,4446]. Strategies are proposed on three levels, as described in Table 3: that of the care professional (micro-level), the organization (meso-level) and the system (macro-level). It is important to focus not only on the changes that can be made at the care professional level, because whether care professionals are able to provide high-quality care greatly depends on organizations and systems [24]. The three levels are intertwined, as strategies at a certain level often require actions on other levels; for example, in order for organizations to establish integration or coordination of care (meso-level), appropriate legal frameworks are often required (macro-level).

Table 3. Strategies and barriers for providing patient-centred care for people with multimorbidity.

Table 3

Strategies and barriers for providing patient-centred care for people with multimorbidity.

Strategies that are particularly important to support patient-centred care for people with multimorbidity include: firstly, using patient-relevant outcomes as the basis for treatment decisions; and, secondly, using patient-relevant outcomes as indicators of health care performance. Namely, improvements in disease-specific outcomes are neither likely to be feasible nor relevant for this patient group. A third strategy that is especially important for people with multimorbidity is assigning to the patient a single contact person (e.g. a ‘trusted doctor’ or ‘trusted nurse’) to coordinate care from various providers. Finally, in order to support collaboration across disciplines and sectors (which is especially important for people with multimorbidity), policy, legislation and regulation that go beyond individual sectors need to be established [3].

The implementation of strategies can be hampered by various structural or individual barriers, which are also listed in Table 3. Apart from these barriers, country-specific characteristics can also affect the extent to which certain strategies can be implemented; for example, in countries with a strong primary care system, it might be easier to integrate and coordinate care, by having the GP as the central coordinating point for care professionals, than it would be in countries with a weak primary care system. Furthermore, some countries might have more resources to enable the implementation of strategies than others [47].

Patient-centredness in innovative care programmes in Europe

An important finding of the ICARE4EU project is that there are currently few programmes in European countries that have been evaluated, so it is difficult to assess their impact. Furthermore, findings from the ICARE4EU project show that few national or regional policies or strategies are available to support patient-centred care for people with multimorbidity in European countries. Consequently, initiatives are currently being organized at the grassroots level.

1. Customizing care to the needs, preferences, values and resources of patients

Current programmes in European countries customize care to the needs, preferences and values of patients in various ways. The basis for providing patient-centred care is communication with patients and informal carers to assess their needs and preferences, and to discuss possible treatment options to reach their goals, while taking their personal resources into account.

Assessment of needs, preferences and values

Current innovative programmes use several tools to assess patients’ needs, preferences and values and to involve them in decision-making about their treatment, care and preferred outcomes. These tools mainly comprise motivational interviewing and providing information leaflets. Other tools include: the use of narrative counselling techniques in order to understand patient needs; pre-treatment discussion sessions among treating doctors on how to motivate patients to participate in decision-making; assessing the knowledge of patients and their informal carers.

Individualized care plans

When the patient and their care professional have agreed their health goals, as well as care and treatment options, an individualized care plan can be used to record the decisions. Most of the selected innovative programmes included an individualized care plan for all patients, or for a specific group of patients (such as especially complex cases or vulnerable/frail patients). In the Belgian ADS project, priorities in the individualized care plan are being set by the patients themselves [48]. A second example in which a personalized care plan is used, is the Dutch INCA model [49]. In this model, treatment plans are developed with each individual patient, adapted to the patient’s specific profile and personal preferences concerning not only the disease(s) he or she has but also taking into account health behaviours and psychological issues. Agreements between the physician and the patient are noted in the care plan. In the Finnish POTKU project, the patient’s health status and self-management support needs are assessed during an appointment with a nurse and an individualized care plan is developed with this nurse (see Box 4) [50]. In this project, the use of the care plan was found to have a positive effect on patient satisfaction with care.

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Box 4

The use of individualized care plans in the POTKU project [50].

Taking patients’ resources into account

People with more resources, such as knowledge, skills and a strong social network, might need less support from care professionals than those who have fewer resources. Of course, patients’ care needs also depend on their health status. Some innovative programmes pay specific attention to the needs of vulnerable subgroups, such as ethnic minorities, people with lower health literacy, people with mental disabilities, people who live in socially deprived areas or people from low income groups. Furthermore, some programmes pay specific attention to so-called ‘complex cases’, i.e. those patients who have extensive care needs because of severe morbidities and limited resources (e.g. limited social support).

A programme that was developed and implemented in the Valencia region of Spain adopted an approach based on the Kaiser’s Stratification Risk Pyramid to define complex patients [51]. In identifying complex cases, the care professionals in this programme take various factors into account, including availability of family support and social and economic needs. The goals of tailoring care to the needs of complex cases are to improve the quality of care for these patients and to keep them in the community as long as possible. This approach of patient stratification according to complexity is similar to the approach of the Finnish POTKU project [50]. In the POTKU project, patients’ resources are explicitly taken into account when customizing care to their needs, and various ‘clientships’ are developed that guide the care professional in arranging care (see Box 5).

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Box 5

The use of patient profiles to customize care in the POTKU project [50].

2. Involving informal carers as co-clients and co-care providers

In almost half of the selected innovative care programmes, the involvement of informal carers was described as an objective. Recognizing the needs of informal carers is an important first step in taking them into account as co-clients. Informal carers are addressed as co-clients in, for example, the Belgian ADS project, which assesses the burden on the informal care-givers as part of the total needs assessment of the eligible patients [48]. At the same time, this programme involves informal carers as co-care providers, by including them in the discussion of individualized care plans, which include actively supportive activities for informal carers. The re-evaluation of the ability of informal carers to provide care is a point of attention in this project.

Furthermore, the programme from the Valencia region supports informal carers as co-care providers by offering them the possibility of direct contact with professionals to clarify daily care issues. In order for informal carers to be recognized and supported as co-care givers, a formal cooperation between informal and formal care-givers might be helpful. However, the selected innovative care programmes indicate that a formal cooperation between informal and formal care-givers is still infrequently established.

3. Integration and coordination of care

In order to provide good quality care (e.g. to avoid overlap in treatments and polypharmacy), integration of care from various disciplines and/or organizations is important. Findings from the ICARE4EU project concerning the integration and coordination of care are described in more detail in another policy brief in this series [2]. The following section therefore only addresses the key aspects of integration and coordination of care.

Integration of care from multiple disciplines

Improving the integration of different units within an organization was the main objective of most of the 101 selected innovative programmes, while improving the integration of different organizations was an important objective for almost half of the selected programmes. The merging of different units or different organizations remained difficult, however, and was established in less than a quarter of the 101 selected programmes. The 101 selected innovative programmes most often involved GPs and primary care practices. Care professionals outside the health sector, such as home helps and social workers, were still relatively infrequently involved. Organizations such as social care organizations, patient organizations, community/home care organizations, nursing homes, pharmacies and insurers, were also infrequently included as stakeholders in the programmes. In addition, government structures were also infrequently partners in the selected programmes. However, the integration of care from different disciplines can be established, as illustrated by the Danish Clinic Silkeborg programme (see Box 6) [52].

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Box 6

Integration of care in the Clinic Silkeborg programme [52].

Improving coordination of care is a main objective in most of the included programmes. Because patients with multimorbidity often receive care from multiple care professionals, having a single contact person who manages the care process is thought to increase the quality of care. In most of the selected programmes, one specific care professional was appointed to be responsible for general communication to the patient and for answering any questions they might have.

Patients being registered with a (primary care) physician of their choice, sometimes referred to as a list system, is an important feature that distinguishes certain health systems in different countries. Germany is a country in which such a system is not in place. However, through the introduction of the ‘trusted doctor’, the Gesundes Kinzigtal programme has been able to realize a kind of list system, which is known to be beneficial for coordinating care and avoiding unnecessary interventions [53]. In order to provide freedom of choice, patients can choose their trusted doctor from among GPs, specialists and psychotherapists.

In the Valencia region, a programme is available that integrates hospital, primary and community health services [51]. The programme introduces roles for two nurses who act as the hospital nurse case manager or the community nurse case manager. These are jointly responsible for monitoring the patient and interacting with other professionals as well as for checking the appropriateness of care received. The case management approach enhances patient-centredness by taking into consideration the patient’s own wishes and needs.

Digital communication systems can be effective in supporting the coordination of care between care professionals and are used in various ways in different programmes to achieve this, including: e-medication (a communication channel between doctors and pharmacists); video conferences for care professionals to exchange information; a joint platform for documentation by specialists and GPs. The programmes that include these communication systems are in Croatia, Finland and Germany. Electronic patient records are used in most of the programmes, providing access to relevant care professionals. The Valencia region programme is supported by an information system that is shared by all the actors involved in the care process, with the system containing, for example, the patients’ clinical documents and diagnoses. In the Belgium SOM+ programme, a comprehensive electronic system for patient monitoring has been developed, in which all care professionals involved in the project can find all relevant documents regarding the client (e.g. care plan, actions implemented) [48]. In the Dutch INCA model, the patients’ goals and treatment plans are communicated among all involved providers through a personal data store (see Box 7) [49].

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Box 7

Care coordination in the INCA model [49].

Discussion

Based on international scientific literature, as well as policy and strategy documents, this policy brief outlines elements of patient-centred care relating to: customizing care to the needs, preferences, values and resources of patients; including informal carers as co-clients and co-care providers; and the integration and coordination of care. In line with these elements, a number of strategies have been outlined in order to improve patient-centredness in caring for people with multiple chronic conditions, at the levels of: the care professional (micro-level); care organizations (meso-level); and the health system (macro-level). Insights from scientific literature are complemented with observations from the ICARE4EU project, which can serve as an inspiration for both (local) governments as well as care organizations and providers that wish to strengthen patient-centred care for people with multiple chronic conditions.

Limitations

Although we have identified a substantial number of innovative and potentially effective approaches to improving patient-centredness of multimorbidity care in European countries, there remains a lack of evidence on their effectiveness and effective components. This is due to the fact that most of these programmes have not been well evaluated. Data on process indicators are usually collected but this is far less often the case when it comes to outcomes. And when data on outcomes are collected, they often do not include outcomes that reflect what matters to patients themselves. Unfortunately, the scientific studies described in the international (mostly non-European) literature also do not provide much evidence on the effectiveness of various interventions to improve patient-centredness in multimorbidity care. This is because: 1) patient-centred care has been operationalized in many different ways, which makes it difficult to identify the effective components of patient-centred care; and 2) most studies on the effects of patient-centred care have not specifically targeted people with multimorbidity. Therefore, it remains unclear whether the (suggested) benefits of the studied patient-centred care approaches also apply to people with multimorbidity. Finally, a limitation of the ICARE4EU project itself was that we could not visit all the identified relevant programmes. So, it often remained unclear how patient-centredness was addressed in practice. Nevertheless, based on the current state of the scientific literature, as well as on the insights gained by studying the care approaches targeting patients with multimorbidity developed in European countries, a number of possible policy directions could be considered.

Policy implications

The performance of specific roles by care professionals, such as that of care coordinator (responsible for continuity and adjustment of care between care professionals) and of ‘trusted doctor’ or ‘trusted nurse’ (the primary point of contact for the patient) should be considered as indicators of health care performance. It is currently difficult for care professionals from different disciplines and sectors to collaborate, partly because different financing methods are used [3]. This is also reflected in the selected programmes from the ICARE4EU project; collaborations between health care and social care were infrequently established. In order to provide good quality care that is responsive to the needs of patients with multimorbidity, these collaborations need to be facilitated.

Patient-relevant outcomes need to be included as indicators of health care performance. Currently applied quality of care measurements address preventive and disease-specific care processes, disease-specific outcome indicators or overall mortality. For people with multiple chronic conditions, the overall quality of care depends on more than disease-specific processes and outcomes [31,32]; for example, quality can be dependent on the extent to which care is responsive to the needs and goals of patients.

Adaptations at the national or regional health system level can facilitate collaboration across and within sectors in order to better meet the comprehensive needs of people with multimorbidity. People with multimorbidity often need care from various care professionals. New roles for care professionals, such as ‘care coordinator’ or ‘trusted doctor’ could improve the quality of care for people with multimorbidity by, for example, reducing overlap in care and signalling problems patients might face earlier. When informal carers are involved, the care coordinator should be in close contact with them to ensure that a good collaboration between formal and informal care is established.

Innovative initiatives that aim to establish patient-centred care for people with multimorbidity at a local, regional or national level can be supported, along with process and outcome evaluations of these initiatives (e.g. an evaluation from the start based on patient-relevant outcomes). The ICARE4EU project found that the evaluation of innovative programmes is often lacking. Evaluations are important to gain insight into effective or ineffective ways of providing care that is responsive to the needs of patients with multimorbidity.

Conclusions

The burden of multimorbidity on patients and health care systems in Europe is increasing. This demands changes in health systems. A patient-centred care approach seems essential in meeting the needs of people with multimorbidity, but will also be beneficial to single-disease patients. Although many elements of patient-centred care apply to all patients, some are specifically important for people with multimorbidity; for example, good coordination and integration of services and a goal-orientated approach to care.

Based on the literature, there are several knowledge gaps when it comes to patient-centred care for people with multimorbidity. First, information on the effectiveness of patient-centred approaches to the care for people with multimorbidity is scarce. Especially in Europe, little effort has been made to study the effectiveness in practice of initiatives that have been implemented. Also, the lack of knowledge on effective strategies for implementing a patient-centred care approach results in weak guidance for policy-makers when developing reform plans [54].

Secondly, studies on the effects of patient-centred care seem to report mostly on the effects on the patient. Little is known about the potential impacts of patient-centred care on the care professional, health care organizations and health care systems. It is important to study the effects of patient-centred care at these levels as well.

Based on findings from the ICARE4EU project, it can be concluded that efforts are being undertaken in many European countries to improve the quality of care for people with multimorbidity by incorporating elements of patient-centred care. Nevertheless, certain elements of patient-centred care, such as the involvement of patients in shared goal-setting, the use of personalized care plans and the involvement of informal carers as co-clients and co-care givers are not yet generally applied. Furthermore, the improvement of care coordination and multidisciplinary collaboration is often the main objective of the programmes. However, collaborations are most often established within the same health care domain and not with social care organizations, patient organizations, nursing homes or informal carers.

Another conclusion that can be drawn, based on the findings from the ICARE4EU project, is that currently most innovative programmes are initiated bottom-up. In order to establish durable patient-centred care for people with multimorbidity, regulations that drive change top-down may be helpful. Only when shifts in the organization and delivery of care are made on all levels of the health care system, is it possible to drive lasting changes. The case studies from the ICARE4EU project can function as inspiring examples of how some countries and regions in Europe have given shape to patient-centred care for people with multimorbidity and can clearly indicate what the barriers to providing patient-centred care are.

The challenge health systems in Europe face is in managing the uniqueness of each patient on a large scale with limited health care budgets. This needs to be achieved by integrating health care with social care (e.g. home care) and the social environment of patients (e.g. informal carers and patient associations).

 
© NIVEL and TU Berlin 2017.

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