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Why user participation?
User involvement is important to ensure that the user and patient perspective is present in both healthcare and clinical studies. User participation in research constitutes a channel to reach target groups and help realise project benefits. The right to receive relevant information and to participate in decisions regarding treatment and follow up is stated in the Patients’ Rights Act. In clinical studies and health service research, health care users can provide a valuable perspective shaped by people’s experiences of healthcare, which is not always obvious to the researchers. A user has first-hand experience with osteoporosis and fractures. Close collaboration between the users and the researchers will therefore more likely contribute to bring different valuable perspectives into the research process.
In Norway there is a political decision that the user perspective should be present in all research. Bent Høie (Minister of Health and Care Services) has expressed the following:
“It is important that the public see the research as useful. The patients, user organisations and health care professonals have to contribute to ensure priorities and relevant topics of reseach, and play an important role in the accomplishment of clinical trials.“
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User participation in NOREPOS
Synøve S. Sørlie is a registered nurse with a postgraduate clinical specialist education in osteoporosis. She has been working in the field for 18 years and has broad experience from individual patient consultations and guidance. She also works for the Norwegian Osteoporosis Society (NOS), where she prepares information material about osteoporosis and answers a support line twice a week. She is also an editiorial board member of the magazine “Osteoporose”. Sørlie is the official NOS representative in NOREPOS since 2014.
NOS is a patient organisation with activities based on the involvement of its members, and has no financial ties to industry. The dissemination activities of NOS reach the at-risk population locally, through peer support work and meetings with local branches across the country. NOS may direct their attention to particular target groups in need of special attention in their information work through the member’s magazine ‘Osteoporose’, website and facebook, meetings and lectures, communication with the International Osteoporosis Foundation and other partners.
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