Actioning person centred care – A new Special Interest Group advancing a global agenda to improve experience

Actioning person centred care – A new Special Interest Group advancing a global agenda to improve experience

Person centred care – holistic care that treats a health or social service user with dignity and sees them as a full person with individual desires, preferences, and values – is often heralded as the way to improve experience. However, there is very little guidance on how to operationalize person centred care in practical ways. Many organisations face barriers to learning from patients, caregivers, and service users’ experiences – while others collect mountains of data and struggle to put it into practice. There is a real opportunity to advance integrated person-centred care by identifying what is working well across sectors and jurisdictions globally.

Launched in 2024, the Actioning Person Centred Care Special Interest Group (SIG) is building a global agenda to advance person centred care in practice. Our current foci are to:

  • Improve how organizations within and across health and social care ecosystems learn from and act on patients, caregivers, and service users’ experiences; and
  • Build partnerships for research and policy to advance change.

At the 2024 ICIC conference in Belfast, we held a workshop to kick off the SIG. Over thirty individuals including community service providers, patients and service users, researchers, and funders came together to collectively identify priorities for the coming year. Participants joined from seven countries, offering diverse perspectives on how experience is understood and acted on. Here we share topics and opportunities for collective action discussed in small breakout groups.

People with lived experience (PWLE) need to help build the table.

When identifying ways to collect and act on experiences, workshop participants emphasized that PWLE need to be at the heart of identifying what matters most and priorities for action. Ensuring that PWLE perspectives continue to be meaningfully reflected in the growing of the SIG will be critical to its success.

Clarity on why organizations ask for experience data and how it is used.

Workshop participants stressed that health and social care organisations are not owed the experiences of patients, caregivers, and service users. The onus is on organisations to build trusting relationships with people who use their services and clearly communicate what they wish to learn from them. Showing how the learnings they collect are used to improve experience can help affirm that their information and insights are not being misused or ignored. An important area of action for the SIG will be to identify success stories across the globe of how experience data has been used to create meaningful change.

Embracing different ways to learn about experience.

Organisations often focus on collecting quantitative experience data, usually in the form of surveys. However, workshop participants stressed that PWLE often prefer to share their experiences through qualitative approaches, such as informal conversations and focus groups. Participants also shared how experiences shared through stories can be especially effective at speaking to the hearts and minds of organisational leaders and decision-makers – especially when underpinned by quantitative data. Helping organisations learn how to optimise different forms of data will be an important opportunity for the SIG.

Incentivizing action on experience. 

In health and social care environments where resources are often scarce – improving experience can be drowned out by other competing strategic priorities. Workshop participants discussed the importance of identifying and leveraging policy windows at various levels to create incentives for change. Participants discussed the importance of identifying key decision-makers within national and international networks, and including representatives from these groups from the onset in the growing SIG.

Embracing a holistic approach.

How organizations think about experience can be at odds with how PWLE think of their experiences. Advancing integrated person-centred care requires a holistic approach that measures experience across and within health and social care ecosystems. A critical opportunity for the SIG is to consider ways to leverage existing data sources and share learnings across organizations and sectors to build a holistic picture of people’s experiences.

What’s next? Building on these learnings, we are developing an agenda for collective action for the coming year and beyond. We invite all individuals with interest or experience in actioning person centred care to join our SIG. This is an exciting time as we co-design a global agenda from the ground up. Sign up here to learn more!

Kerry Kuluski
Inaugural Dr. Mathias Gysler Research Chair in Patient & Family Experience and Scientist
Associate Professor