| 1. |
- Nelson, Eugene C., et al.
(författare)
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Patient focused registries can improve health, care, and science
- 2016
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Ingår i: BMJ. British Medical Journal. - : BMJ Publishing Group Ltd. - 0959-8146 .- 0959-535X. ; 354
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Tidskriftsartikel (refereegranskat)abstract
- Large scale collection and analysis of data on patients’ experiences and outcomes have become staples of successful health systems worldwide. The systems go by various names—including registries, quality registries, clinical databases, clinical audits, and quality improvement programmes—but all collect standardised information on patients’ diagnoses, care processes, and outcomes, enabling systematic comparison and analysis across multiple sites. Hundreds of what we will term, for simplicity, “registries,” now exist around the world. The United Kingdom is home to over 50 clinical audit programmes, the United States has over 110 federally qualified registries certified to report quality metrics, and Sweden, perhaps the registry epicentre, has over 100, covering conditions from birth to frail old age.These registries have had far reaching effects. They facilitate public reporting, retrospective and prospective research, professional development, and service improvement. They reveal variations in practices, processes, and outcomes, and identify targets for improvement. In the UK, they have been associated with many notable successes, including improvements in management of cardiovascular disease and stroke, cancer, and joint replacement.
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| 2. |
- Riggare, Sara, et al.
(författare)
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Patients are doing it for themselves : A survey on disease-specific knowledge acquisition among people with Parkinson's disease in Sweden.
- 2017
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Ingår i: Health Informatics Journal. - : SAGE Publications. - 1460-4582 .- 1741-2811.
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Tidskriftsartikel (refereegranskat)abstract
- Effective self-management is key to living well with Parkinson's disease and one important aspect is disease-specific knowledge. This article explores how people with Parkinson's disease in Sweden (1) acquire disease-specific knowledge and (2) use Parkinson's disease-related healthcare. Data were collected through an online survey, which had 346 respondents (16-87 years old, median age: 68 years, 51% male; time since diagnosis: 0-31 years, median time: 7 years). Our results show that disease-specific knowledge is mainly found online, especially for women with Parkinson's disease and people with Parkinson's disease of working age, that most people with Parkinson's disease in Sweden see their neurologist for 1 h or less per year and only one in two people with Parkinson's disease has regular contact with other Parkinson's disease-related healthcare professionals. We also find that people with Parkinson's disease reporting higher levels of specific knowledge also are more likely to be satisfied with the amount of time they get with their neurologist, regardless of the amount of time.
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