Patient organizations and primary care development: reflections by patients with chronic diseases

To explore how patients with chronic diseases, as well as members of patient organizations, perceive primary care and how they think about how to participate in primary care development. Focus group interviews with 28 patients in three regions in Sweden were conducted. We identified four themes: Availability of care, How to be met by professionals, Information needs and Continuity and prevention in care. Important was to meet the same doctor at every visit and to be met with empathy and knowledge about your disease. Suggestions about better use of technical information services, introduction of a coordinator in the waiting room and longer and varied open hours came up. The information needs for newly diagnosed and those with a long disease trajectory differed and care treatment plans were asked for by many participants. Discussions between patient organizations about how to participate in education of health care professionals were recommended. Patients’ with chronic diseases want to take more active part in their own care. By promoting more contacts between patient organizations, influence on the politic agendas may be achieved. To achieve effects, the patient organizations should be proposed to be included and to activate themselves about these results. If so, a stronger patient voice may be heard in the society. A change in the paternalistic philosophy in primary health care is also needed so the patients’ rights and contribution will be acknowledged and joint education with health professionals could be one way