Involving patients and relatives
OUH puts the patient first. This obliges in all respects – also in relation to research. Experience shows that involving patients and their relatives can give added value to research. We anticipate that both the quality and the relevance of the research will be enhanced.
Patients are the primary stakeholders in health care. The inclusion of patients, relatives, and patient organizations in the research process will encourage a wide collaboration between a range of parties who have an interest in solving a problem or promoting a cause – and can bring resources to the collaborative enterprise.
If the research that is undertaken reflects patients’ needs and views on what needs to be researched, the results will be more readily implemented into clinical practice. It should also be easier to recruit citizens to participate in research Projects.
The patients and public will have an advisory role. The researcher will always have overall responsibility for the research process.
The strategy of involving patients and the public should be seen as a long-term process-oriented action plan, where the initial focus is on increasing the visibility of existing projects so that the experiences can be shared with other researchers. Later on, we will be establishing support services for researchers, showing how to involve patients and their relatives in research projects. The activities will be continuously evaluated so that OUH and KI can learn from the knowledge gained.
Influence: OUH and KI will ensure that there is strong management support for the involvement of patients and public in research, and that this involvement will be considered in all research Projects.
Information: It must become part of the culture at OUH and KI that patients and/or relatives are involved in research projects and are aware of the opportunities for contributing to research.
Infrastructure and incentives: Research is being undertaken in the area of patient and public involvement. ‘Best practice’, and the advantages and disadvantages of this involvement will be communicated to other researchers.
- By 2017: The Centre for Patient and Public Involvement will be established. Its key activities will be research and dissemination of “best practice” and the advantages and disadvantages of public involvement in research.
- By 2018: Patients will be participating in OUH’s Research Council.
- By 2018: Involvement of patients and relatives will be a key part of the research strategy of OUH departments.
- By 2020: Preparation of a status report on experiences with involving patients and the public in research.
- By 2021: All OUH departments will have experience of involving patients and/or relatives in the research process.
At national level, patient involvement is strengthened by, for example, the Law on Patients’ Rights, the free hospital choice, the national patient satisfaction surveys, and the “Health service plan for the citizens – our health service”.
The Region of Southern Denmark has prepared a strategy for patient and public involvement.
“Putting the patient first” is the first element in OUH’s vision statement.
OUH is developing a number of overriding concepts, one of which is patient involvement.
One of the key areas in OUH’s development plan is “stronger collaboration with patients”.
Patients are being involved in research projects at OUH, but the approach is still in its infancy.