Leads: Professor Robin Miller, Dr Caroline Jackson (Social Care)

Dates: September 2021 to May 2023

Background:

Integrated care system are at their heart about health, social care and wider services being better co-ordinated around people, families, and communities. This requires those who plan, design, and deliver services to understand what is important to people on an individual and collective basis. People’s circumstances and aspirations may change with their health conditions and social situations and through new challenges arising in wider society. It is therefore important that opportunities to influence and co-produce services are not a one-off exercise, but rather are on-going and responsive to people’s interests and perspectives[1].

The centrality of such engagement to integrated care has been widely recognised. For example, the World Health Organisation states that integrated care “consciously adopts the perspectives of individuals, families and communities, and sees them as participants as well as beneficiaries”. Despite the importance of co-production to integrated care, all too often people, families, and communities report that this is not what they experience in practice. This applies to all aspects of integrated care – how needs and opportunities are initially understood and set out in national and regional policy, how resources are allocated, and services designed and organised, and in how people are personally supported by professionals and teams. Integrated care research too often provides limited opportunities for people to set the questions to be explored and therefore the evidence gathered has limited impact on their day-to-day lives. Opportunities to engage for those from communities which are often marginalised in society seem particularly lacking, despite the recognition that integrated care needs to be responsive, flexible, and pro-active in engaging with diversity . This is crucial if integrated care is to understand the needs of those it seeks to serve and play its part in enabling fair access to and fair treatment by health and care services for everyone.

Policy and Practice Partners

Health and Social Care Leadership Community Advisory Board

Co-Funding Partners:

Partners in this project included the University of Toronto and Leiden University Medical Center.

Aims and Objectives:

The project aims to increase understanding about the motivations and role of people with lived personal experience of health and social care who get involved with shaping health and care systems. It also considers what has supported or hindered them once engaged. It is intended that learning about this may support health and care organisations and professionals understand more about what is needed at a practical level to make co-production an embedded reality in integrated care.

Methods:

Participants for the project (n= 25) were recruited based on purposeful sampling through integrated care practice and academic networks. To participate in the study people needed to have used their lived experience to speak out and help to shape integrated care services for individual benefit and for the general good.

Participants needed to have responded yes to the following questions:

•Have you accessed health and / or social care services as a patient / service recipient or as a family caregiver?

•Have you contributed to activities relating to the review, development or oversight of health and care services, or spoken out as a campaigner or activist to make services better?

•Have these activities been seeking to make services more integrated (i.e. person-centred and coordinated across professionals and services)?

Interviews were conducted from February to June 2022. Focus Groups were held in December 2022 and January 2023

Main results:

The impacts of lived experience in relation to integrated care included – developing the skills of the current and future professional and managerial workforce at both local and national level, influencing national and regional policy to improve standards and options for care, developing new supports to guide people and families through the health and care systems, meeting gaps in current provision, and strengthening the quality of care in the community and in hospital settings.

Citizen leaders develop their own approaches to influencing those with access to resources and influence. Many of these are related to communication – sharing their and others’ experiences through storytelling to individuals or groups, facilitating conversations between stakeholders, and using social media and more traditional press routes to engage a wider audience. They develop expertise in related processes such as quality improvement, community activism, political lobbying, and education and training of health and social care professionals and managers. Developing and maintaining relationships with those with power is often key to inform the understanding of these individuals, be aware of emerging opportunities and to effect change.

Activities and supports which could make a practical difference to enabling greater engagement and influence include – long term investment in people who were undertaking such roles through training, mentoring and access to new opportunities helped to maintain people’s commitment and help them grow in skills and confidence; meeting of related expenses such as travel, technology costs, and support for alternative care arrangements for those who were carers were basis necessities; and, paid roles which enable people to dedicate more of their time and ensure that such opportunities are not only open to those with personal wealth.

Conclusions:

The collective voices of the participants highlights that there are important lessons to be learnt regarding good practice in co-production and citizen leadership activity. The competences required of them and the emotional and time-consuming toll that engagement can take highlight the passion, hard work and determination of people who engage in such activities. The actions or inaction from professionals and organisations were notable as being the difference between positive or more challenging interactions with the systems and services

Implications for Implementation:

The report identifies recommendations to remove barriers to participation, facilitate education and development, address policy, governance, organisation & deliver issues, and encourage research and evaluation to be more accessible and co-produced.

[1] Gray, C. S., Grudniewicz, A., Armas, A., Mold, J., Im, J., & Boeckxstaens, P. (2020). Goal-oriented care: a catalyst for person-centred system integration. International journal of integrated care, 20(4). Available here.