gms | German Medical Science

Background and Purpose: Service-user involvement is increasingly recognized as significant part of health research. In Anglophone countries, this approach is already integrated in research, whereas in other countries, only first steps have been taken. User involvement in research positively affects healthcare and the quality of life of patients. It enables researchers to understand health needs and requirements from the users’ perspective, thus enabling the development of tailored services, self-management programs or health related technologies. However, service-user involvement involves methodological challenges. The level of involvement and suitable methods of involvement must be defined, depending upon the research aim, the target users and the setting.

This methodological symposium aims to address what service-user involvement signifies and how it can be applied, by presenting three research projects. Methodological consequences, practical pitfalls and challenges of user involvement will be discussed.

Methodological and Theoretical Focus:

Presentation 1: The AIDE-MOI-Study explored needs and utilization aspects in everyday life from the perspective of community-dwelling older people by involving them iteratively in the development of a wearable fall detection sensor linked to a smartphone application. The methodological approach, based on a theoretical framework, provides guidance in determining the users and the methods of involvement corresponding to the stage of development. Data was collected via focus groups and analysed using qualitative content analysis. User involvement allowed going beyond technical requirements, thus identifying human factors influencing acceptance and later usage.

Presentation 2: Patients, who wish to play an active role in health research or in the training of health professionals, require methodological and professional skills. Similarly, health researchers and trainers working with patients benefit from specific methodological experience. Within the PIONEERS action research project, academics and patients co-operatively developed a framework for patient involvement in research and education at university level, using qualitative social science research methods. A follow-up project aims to systematically implement and evaluate this framework on large scale. Thus, co-operation with patients can be inherent part of education and research.

Presentation 3: The MOCCA-project evaluates a newly developed coaching program delivered by outpatient nursing services for community-dwelling persons with mild to moderate dementia. This recovery orientation in nurses’ coaching program is being implemented to enhance autonomy and self-determination of persons with dementia. Research aims to explore how interactions between nurses, persons with dementia and relatives are experienced and how the recovery focus impacts on care relationships and on long-term care pathways. Thus, a methodological strategy enabling persons with dementia to be involved as equal partners in data production is needed. Flexible interviewing techniques and participant observation of coaching interactions have been chosen.

Conclusions: Involving service-users in research and teaching challenges established modes of academic work. Issues concerning power must be considered. If users are to be granted equal power in the production and distribution of knowledge, methods must be adapted, and a common understanding of collaborative partnerships needs to be established.

Programme Overview:

1.

Introduction: Participatory/collaborative approaches of service-user involvement and their methodological consequences

2.

Project-presentation AIDE-MOI

3.

Project-presentation PIONEERS

4.

Project-presentation MOCCA

5.

Conclusions, moderated discussion