Anniversary: For ten years The Person Council has strengthened GPCC with patients' and relatives' knowledge

When GPCC’s Person Council for Patients and Carers/Relatives was formed in 2016, the ambition was to increase the input of patient- and relative/carer perspective, that is lived experience of illness and Swedish healthcare. Since then, 37 different patients and carers have been members of the council. The members have brought with them experience of diabetes, cancer, cardiovascular disease, psychiatry, neurological diseases, rare diagnoses, disability, stroke and aphasia, HIV, allergies and asthma, and other diseases. 

Several of the members have had experience of more than one disease and of both being a patient and being a carer/relative. Many of the members are connected to patient organisations, some examples are The Swedish Kidney Association, The Swedish Heart and Lung Association, Autism Sweden, The Network Against Cancer, The Swedish Diabetes Association, The Swedish Asthma and Allergy Association and the The Swedish Psoriasis Association. 

From advisor to active partner 

The role of the Person Council has evolved over the ten years. At an evaluation of their own experience of participating in the Council at the end of 2017, the members expressed a desire to work closer to the research at GPCC. They wanted to become more involved in the development of the Centre, and in how projects and research questions were prioritised. Much of this has since become part of the Person Council's work. 

Researchers now participate at all Person Council meetings, and members participate as co-researchers in GPCC research projects and in working groups. They have also reviewed the patient perspective in new research projects. The Council has initiated and contributed to communication materials, films and publications. They have represented the patient perspective at the annual Gothenburg Science Festival, Almedalen Week and at international conferences. Co-creation is central, and the Person Council has become much more than a forum for giving opinions internally. 

A model that has attracted attention 

When international experts evaluated GPCC in 2021, the Person Council was highlighted as a particular strength in the Centre’s organisation and working methods. The evaluators described the Person Council as "a unique model for other research centres, locally, nationally and internationally". 

The evaluators highlighted how The Council were involved at several levels, from developing strategy and selecting a particular strategic research path, to managing projects and reviewing new research proposals. The evaluation contributed to GPCC being granted an additional six-year operating period, 2022–2028. 

Ten years of different perspectives 

The Person Council has undergone continuous change and renewal. Over the past ten years, the council has had a total of 37 members: 25 have participated based on their own experience as patients, nine as next of kin, and several based on experience as both patient and next of kin.

Its geographic and organizational reach has expanded. Although many members have been based in Gothenburg and Western Sweden, the council has included—and is increasingly attracting—participants from various parts of Sweden.

Looking to the future

The tenth-anniversary celebration, held during the GPCC’s annual kick-off event in September, offered an opportunity to both look back and to discuss the next steps. How can the Council’s involvement in the GPCC’s work improve further? How can it be ensured that their input leads to tangible results? And how can researchers become even better at providing feedback on the actual outcomes of the Council’s involvement?

During the Kick-off anniversary celebration, current and former members of the Person Council met to share their experiences. Topics included what the Council’s work had meant to them personally, as well as what the GPCC could do better. After ten years, the ambition remains the same as at the outset, although the methods have evolved. The GPCC’s activities and research into person-centred care must be conducted in collaboration with the very people for whom the care is intended.