Development and evaluation of person-centred care services: do not forget compassion!
Participants to The BMJ’s roundtable debate “How can we get better at providing patient centred care?” report that medical care must show people “dignity, compassion and respect.” But for it to be person-centred services must also be well coordinated and structured in a way that supports and empowers people to take charge of their health and long term conditions.
Two major challenges faced by healthcare systems internationally include the fact that the numbers of older people and those living with chronic conditions and long term disabilities are growing and health and social care budgets are under increasing pressure. If they want to provide high quality care that allows people to access the best possible quality of life, it is recognised that they need to redesign the relationship between people and the services that provide their care.
In person-centred care, health and social care professionals liaise collaboratively with people who access the services. Person-centred care supports people to develop the knowledge, skills and confidence they need to more effectively manage and make informed decisions about their own health and health care.1 It is coordinated and tailored to the needs of the individual. And, crucially, it ensures that people are always treated with dignity, respect and compassion. Compassion involves demonstrating characteristics such as empathy, sensitivity, kindness and warmth and it is a key competency needed to be person-centred and meet the needs of patients.2
In England, for example, Shared-Decision-Making (SDM),3 as a process in which healthcare professionals and patients work together to select tests, treatments, management, or support packages, based on clinical evidence and patients’ informed preferences, is now embedded in the National-Health-Service (NHS) Constitution as leading person-centred care practice.4The NHS Mandate objectives reiterates the importance ‘to ensure the NHS becomes dramatically better at involving patients and their caregivers, and empowering them to manage and make decisions about their own care and treatment.’ The Shared Decision Making Collaborative5 was created by The National-Institute-for-Health-and-Care-Excellence (NICE) to support the wider health and care system to embed shared decision making into routine practice. Their latest action Plan (2016)6 confirms compassionate care as key competency needed to bring about person-centred approaches (including SDM) into practice; regulators, Royal Colleges and professional bodies are now working together to embed these in undergraduate and postgraduate training programmes.
In other countries, such as Cyprus, there is awareness that patients play a crucial role in decision-making, and SDM practices could be considered as innovative strategies to promote person-centred health services delivery.7Even though Cyprus is a laggard in the implementation of health policies imputed to the lack of a universal coverage health system, in 2016 a new law mandated the participation of patients in the decision making. There is also recognition that encouraging compassion through teaching and learning is crucial to support the humanistic nature and personal values of care, but discussion about the actual development of compassionate-based SDM practices is still in embryo.8
The patient-oriented research programme promoted by Tinelli and colleagues refers to a continuum of research that involves the patients as partners, focusses on patient preferences and their identified priorities and improves their outcomes. Their research is conducted by a multidisciplinary team in partnership with relevant stakeholders, with the purpose of developing and applying decision support tools that can help the redesign of service provision towards patient-centred care and their evaluation looking at patient outcomes as key indicators of success.
An example of their work recently published in Health Policy allows to have a better understanding of patients’ preferences when choosing health care services, and how they value SDM across the English and Cypriot nations (with different healthcare system and health service delivery experiences).9With their research they are able to estimate the components of SDM that people value, their relative importance; but also the potential participation rates to specific SDM programmes (designed according to patient experience). Discrete-choice-experiments (DCEs), a health economic technique for eliciting individual preferences is playing a pivotal role in their research.10 Their application to develop and value healthcare interventions from a person-centred perspective has been reported in health and social care settings and, crucially, they enabled to value aspects of care beyond health outcomes.10 Specific applications to evaluate SDM is reported elsewhere11,12.
From a policy decision making perspective the recurring questions to be answered in healthcare service developments would be ‘who should do what to whom’, ‘with what health and social care resources’, and ‘with what relation to other health and social care services’. The answers to these questions depend on estimates of the relative value of alternative services in terms of patient, but also clinical and economic outcomes. Health economic evaluation uses a range of approaches whereby these estimates of relative value can be ascertained and interpreted. The incorporation of DCE within an economic evaluation framework is possible and can allow to place a value on factors beyond health outcomes (e.g. QALYs, quality-adjusted-life-years) into the evaluation and compare results with the standard cost-per-QALY approach.13 Results from Tinelli et al9 confirmed that patients value SDM and the value they place on compassion in delivering of care was scored high across nations. However, SDM models may need to be tailored to specific health care setting requirements and patient experiences. The case study of diabetes care offers examples of good SDM practices and can provide common ground for developing a SDM framework to fit the needs of multiple settings and the management of chronic conditions. The DCE-based model presented here appears to be a successful framework to capture patient preferences for diabetes care and it could also be used as springboard for a much needed larger scale evaluation of stakeholder preferences when applying SDM processes to the management chronic diseases across systems and settings.
Overall our answer to the question “How can we get better at providing patient centred care?” would be to explore further the proposed DCE-based model in chronic disease management and do not forget compassion when developing and evaluating person-centred care.
1. The Health Foundation. Person-centred care made simple. Quick guide 2014. Health Foundation Report. http://www.health.org.uk/sites/health/files/PersonCentredCareMadeSimple.pdf
2. Haslam D. “More than kindness”. Journal of Compassionate Health Care. 2015; 2:6. DOI: 10.1186/s40639-015-0015-2
3. Barry MJ, Edgman-Levitan S. Shared Decision Making — The Pinnacle of Patient-Centered Care. N Engl J Med 2012; 366:780-781
4. The NHS Mandate. https://www.england.nhs.uk/.
5. Gillian Leng. The Shared Decision Making Collaborative 2015. https://www.england.nhs.uk/
6. Gillian Leng. The Shared Decision Making Collaborative Action Plan 2016. https://www.nice.org.uk/Media/Default/About/what-we-do/shared-decision-m....
7. WHO Europe. Transforming health services delivery towards people centred-health systems 2014. http://www.euro.who.int/__data/assets/pdf_file/0016/260710/Transforming-...
8. Shea S, Samoutis G, Wynyard R, et al. Encouraging compassion through teaching and learning: a case study in Cyprus. Journal of Compassionate Health Care 2016; 3:10. DOI: 10.1186/s40639-016-0027-6.
9. Tinelli M, Petrou P, Samoutis G, Traynor V, Olympios G. McGuire A. Implementing shared-decision-making for diabetes care across country settings: what really matters to people? Health Policy 2017 (in press) DOI: http://dx.doi.org/10.1016/j.healthpol.2017.05.001
10. Tinelli M. Applying discrete social experiments in social care research. Method Reviews 2017, 19. NIHR, SSCR, London, UK. http://www.sscr.nihr.ac.uk/MR19.
11. Longo M, Cohen D, Hood K, et al. Involving patients in primary care consultations: assessing preferences using discrete choice experiments. British Journal of General practice 2006; 56: 35-42.
12. Mühlbacher AC, Bethge S, Reed SD and Schulman A. Patient Preferences for Features of Health Care Delivery Systems: A Discrete Choice Experiment. Health Serv Res 2016; 51: 704–727.
13. Tinelli M, Ryan M, Bond C. What, who and when? Incorporating a discrete choice experiment into an economic evaluation. Health Economics Review. 2016;6:31. doi:10.1186/s13561-016-0108-4.
Competing interests: No competing interests