Background The evidence-based decisions in health policy should be based on the results of studies. A great part of the research that informs clinical practice examines the everyday health care settings. Therefore, all participants in the system, including patients, doctors, nurses, also take part in working out health policies.
Rheumatic diseases bring a great burden both to the particular patient and the healthcare system. The research has a long tradition of cooperation between different health care levels.
On 1-2 March 2012 in Tallinn an international conference …Science: together for all of us. Example of rheumatic diseases“ was organized. The idea of the conference was conceived at a meeting of the representatives of the patients’ organization Estonian Rheumatism Association and the East-Tallinn Central Hospital.
Objectives The objective of the conference was to raise awareness on the importance of research for a small country like Estonia and the need for international collaboration as well as for collaboration between researchers and patients.
Methods The conference target groups were researchers, health professionals-practitioners, patients, decision-makers, politicians, journalists. About 160 persons participated from different places in Estonia.
The organizers invited to participate the best presenters of rheumatologists, researchers and patient organizations from the United States, the Netherlands and Estonia. The moderators were Amye Leong and Marika Tammaru. There were three panels:
Research at international and national level,
Research at individual level – what can the patient do?,
Research at the organization level – what can the hospital do?
and the patient education session.
On three parallel workshops …Clinical research in Estonia: how to raise its popularity and significance for decisions in health care?“ different groups discussed what the state, hospitals and patients can do.
The second panel looked at the research from the perspective of the patient. The EULAR program “Patients as Research Partners” was introduced and examples of its achievements were given by Maarten de Wit. Estonia’s participation in the patient engagement programs was discussed. The panel provided examples of studies conducted in Estonia in which patients have participated with the rights of equal research partners.
Results Doctors, nurses, rheumatologists, GP, physiotherapists, researchers, patients, family members and students were working together. After the conference our patients’ organisation was contacted by Estonian Agency of Medicines in order to discuss how to involve patients’ organisations in planning of clinical trials in Estonia and how to make this involvement to become a prerequisite for getting an approval from the ethical committee.
Conclusions The organizers can look back on a successful meeting with a perspective for new collaborations and more interest for research of all stakeholders.
Disclosure of Interest None Declared