The Roundtable was chaired by Jo Groves, IAPO's CEO. Jeremiah Mwangi, IAPO's Policy and External Affairs Director, opened the first of three presentations. Jeremiah highlighted that seven years on from the publication of IAPO's Declaration on Patient-Centred Healthcare, there are still gaps in the evidence base for patient-centred healthcare. However, although systematic evidence is limited, there is the opportunity to bring together patient experiences to understand patient journeys and achieve a patient-centred approach.
Sean McDougall, Chair of IAPO member, Pain UK, then spoke about how we understand patient experiences and the need to think about the delivery of health and care outside of its current structures. Sean highlighted that understanding patient experiences is essential to the improvement of care and this requires understanding what those experiences mean, and not just capturing them.
Johan Vos, Director of International Development, for IAPO member Alzheimer's Disease International (ADI), rounded off the opening presentations by exemplifying the role of patients and carers in campaigns and the way in which members can bring the patient voice to national and international policy-making. Johan highlighted that a person with a condition is best placed to say what it is like to have that condition and what needs to be done to improve their quality of life. Hearing the stories of patients and carers, Johan explained, can move policy-makers to make the changes needed.
The discussion then opened to the table, and participants reiterated the importance of sharing patient, family and carer stories. Participants discussed the importance of prevention, self-management and treatment, with an emphasis on the need for patient-led patient information. Health systems should be able to respond to individual preferences and organizations can support the voices of individual patients while providing information and evidence on how a patient-centred system can meet the needs of individuals. Johan highlighted that this is where patients’ organizations come in, by taking the emotive stories of patients to policy-makers and demonstrating the changes that are required.
IAPO's Declaration on Patient-Centred Healthcare
IAPO's Patient-Centred Indicators project
IAPO's Policy Statement and Guidelines on Patient Involvement