Patient involvement in diabetes care: experiences in nine diabetes care groups.
BACKGROUND
Despite the expected beneficial effects on quality of care, patient involvement in diabetes care groups, which deliver a bundled paid integrated care programme for diabetes type 2, seems to be limited. The aim of this study was to gain insight into levels and methods of patient involvement, into facilitators and barriers, and into the future preferences of care groups and patient representatives.


METHODS
Semi-structured interviews were held with 10 representatives of care groups and 11 representatives of patient advocacy groups. An adapted version of Arnstein's ladder of citizen participation was used to define five levels of patient involvement.


RESULTS
Patient involvement in care groups was mostly limited to informing and consulting patients. Higher levels, i.e., advising, co-producing and decision-making, were less frequently observed. Care groups and patient representatives perceived largely the same barriers and facilitators and had similar preferences regarding future themes and design of patient involvement.


CONCLUSIONS
Constructive collaboration between diabetes care groups and patient representatives to enhance patient involvement in the future seems viable. Several issues such as the lack of evidence for effectiveness of patient involvement, differences in viewpoints on the role and responsibilities of care groups and perceived barriers need to be addressed.
National Institute for Public Health and the Environment, Centre for Nutrition, Prevention and Health Services, Bilthoven, The Netherlands.
Lidwien C
LC
Lemmens
National Institute for Public Health and the Environment, Centre for Nutrition, Prevention and Health Services, Bilthoven, The Netherlands.
Simone R
SR
de Bruin
National Institute for Public Health and the Environment, Centre for Nutrition, Prevention and Health Services, Bilthoven, The Netherlands.
Jeroen N
JN
Struijs
NIVEL Netherlands Institute for Health Services Research, Utrecht, The Netherlands.
Mieke
M
Rijken
Department of General Practice, EMGO Institute VU University Medical Centre, Amsterdam, The Netherlands.
Giel
G
Nijpels
National Institute for Public Health and the Environment, Centre for Nutrition, Prevention and Health Services, Bilthoven, The Netherlands; Scientific Centre for Transformation in Care and Welfare (Tranzo), University of Tilburg, Tilburg, The Netherlands.
Caroline A
CA
Baan
bundled payment; care groups; diabetes; integrated care; patient involvement