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- Hägglund, Maria, Lektor, 1975-, et al.
(författare)
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A Nordic Perspective on Patient Online Record Access and the European Health Data Space
- 2024
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 26:1
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Tidskriftsartikel (refereegranskat)abstract
- The Nordic countries are, together with the United States, forerunners in online record access (ORA), which has now become widespread. The importance of accessible and structured health data has also been highlighted by policy makers internationally. To ensure the full realization of ORA’s potential in the short and long term, there is a pressing need to study ORA from a cross-disciplinary, clinical, humanistic, and social sciences perspective that looks beyond strictly technical aspects. In this viewpoint paper, we explore the policy changes in the European Health Data Space (EHDS) proposal to advance ORA across the European Union, informed by our research in a Nordic-led project that carries out the first of its kind, large-scale international investigation of patients’ ORA—NORDeHEALTH (Nordic eHealth for Patients: Benchmarking and Developing for the Future). We argue that the EHDS proposal will pave the way for patients to access and control third-party access to their electronic health records. In our analysis of the proposal, we have identified five key principles for ORA: (1) the right to access, (2) proxy access, (3) patient input of their own data, (4) error and omission rectification, and (5) access control. ORA implementation today is fragmented throughout Europe, and the EHDS proposal aims to ensure all European citizens have equal online access to their health data. However, we argue that in order to implement the EHDS, we need more research evidence on the key ORA principles we have identified in our analysis. Results from the NORDeHEALTH project provide some of that evidence, but we have also identified important knowledge gaps that still need further exploration.
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| 3. |
- Cenci, M. Angela, et al.
(författare)
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Dyskinesia matters
- 2020
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Ingår i: Movement Disorders. - : Wiley. - 0885-3185 .- 1531-8257. ; 35:3, s. 392-396
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Tidskriftsartikel (refereegranskat)abstract
- Levodopa-induced dyskinesia (LID) represents a significant source of discomfort for people with Parkinson's disease (PD). It negatively affects quality of life, it is associated with both motor and nonmotor fluctuations, and it brings an increased risk of disability, balance problems, and falls. Although the prevalence of severe LID appears to be lower than in previous eras (likely owing to a more conservative use of oral levodopa), we have not yet found a way to prevent the development of this complication. Advanced surgical therapies, such as deep brain stimulation, ameliorate LID, but only a minority of PD patients qualify for these interventions. Although some have argued that PD patients would rather be ON with dyskinesia than OFF, the deeper truth is that patients would very much prefer to be ON without dyskinesia. As researchers and clinicians, we should aspire to make that goal a reality. To this end, translational research on LID is to be encouraged and persistently pursued.
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| 4. |
- Dahlberg, Marie, et al.
(författare)
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Why publish? : An interview study exploring patient innovators’ reasons for and experiences of scientific publishing
- 2024
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Ingår i: Research Involvement and Engagement. - : BioMed Central (BMC). - 2056-7529. ; 10:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Scientific publications featuring patient-driven innovations (i.e., innovations that are developed and driven by patients or informal caregivers) are increasing. By understanding patient innovators' experiences of research publication, the scientific community may be better prepared to support or partner with patient innovators. Thus, the aim of this study was to explore patient innovators' reasons for and experiences of authoring scientific publications about their innovations.Methods: Qualitative semi-structured interviews were conducted with 15 international patient innovators from three continents who had published in scientific journals. Participants were identified through a scoping review on patient-driven innovations and snowball sampling. Interviews were conducted from June to October 2022 and the data was analyzed using the Framework Method.Findings: Participants' reasons for publishing in scientific journals were to strengthen the roles and voices of patients and informal caregivers, and to get recognition for their innovations. Some published as a response to serendipitous opportunities. Several positive experiences were reported: collaborations defined by transparency, mutual respect, and meaningful participation; learning and competence development; and gained confidence regarding the value of lived experiences in research. Participants also reported negative experiences, such as cultural barriers manifested as conservatism in academia and power imbalances between participants and researchers, and structural barriers regarding academic affiliations and research funding.Conclusions: Despite progress in increasing patient and public involvement in research and publication, our study found that patient innovators still experience barriers. This suggests that continued efforts are needed to facilitate contributions from patient innovators and other public actors to the production of relevant and meaningful research.
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| 5. |
- Filograna, Roberta, et al.
(författare)
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PARKIN is not required to sustain OXPHOS function in adult mammalian tissues
- 2024
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Ingår i: npj Parkinson's Disease. - : Springer Nature. - 2373-8057. ; 10:1
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Tidskriftsartikel (refereegranskat)abstract
- Loss-of-function variants in the PRKN gene encoding the ubiquitin E3 ligase PARKIN cause autosomal recessive early-onset Parkinson’s disease (PD). Extensive in vitro and in vivo studies have reported that PARKIN is involved in multiple pathways of mitochondrial quality control, including mitochondrial degradation and biogenesis. However, these findings are surrounded by substantial controversy due to conflicting experimental data. In addition, the existing PARKIN-deficient mouse models have failed to faithfully recapitulate PD phenotypes. Therefore, we have investigated the mitochondrial role of PARKIN during ageing and in response to stress by employing a series of conditional Parkin knockout mice. We report that PARKIN loss does not affect oxidative phosphorylation (OXPHOS) capacity and mitochondrial DNA (mtDNA) levels in the brain, heart, and skeletal muscle of aged mice. We also demonstrate that PARKIN deficiency does not exacerbate the brain defects and the pro-inflammatory phenotype observed in mice carrying high levels of mtDNA mutations. To rule out compensatory mechanisms activated during embryonic development of Parkin-deficient mice, we generated a mouse model where loss of PARKIN was induced in adult dopaminergic (DA) neurons. Surprisingly, also these mice did not show motor impairment or neurodegeneration, and no major transcriptional changes were found in isolated midbrain DA neurons. Finally, we report a patient with compound heterozygous PRKN pathogenic variants that lacks PARKIN and has developed PD. The PARKIN deficiency did not impair OXPHOS activities or induce mitochondrial pathology in skeletal muscle from the patient. Altogether, our results argue that PARKIN is dispensable for OXPHOS function in adult mammalian tissues.
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| 8. |
- Salmi, L, et al.
(författare)
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Six countries, six individuals: resourceful patients navigating medical records in Australia, Canada, Chile, Japan, Sweden and the USA
- 2020
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Ingår i: BMJ open. - : BMJ. - 2044-6055. ; 10:9, s. e037016-
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Tidskriftsartikel (refereegranskat)abstract
- In the absence of international standards, widely differing attitudes and laws, medical and social cultures strongly influence whether and how patients may access their medical records in various settings of care. Reviewing records, including the notes clinicians write, can help shape how people participate in their own care. Aided at times by new technologies, individual patients and care partners are repurposing existing tools and designing innovative, often ‘low-tech’ ways to collect, sort and interpret their own health information. To illustrate diverse approaches that individuals may take, six individuals from six nations offer anecdotes demonstrating how they are learning to collect, assess and benefit from their personal health information.
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| 9. |
- Wannheden, Carolina, et al.
(författare)
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Safety-netting strategies for primary and emergency care: A codesign study with patients, carers and clinicians in Sweden
- 2024
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Ingår i: BMJ Open. - 2044-6055.
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Tidskriftsartikel (refereegranskat)abstract
- Objectives To codesign safety-netting strategies for primary and emergency care settings by integrating the experiences and ideas of patients, carers and clinicians. Design A codesign process involving two focus group discussions, eight individual interviews and five workshops. All sessions were audio recorded and transcribed verbatim. Data were analysed using qualitative content analysis and reported using the Consolidated criteria for Reporting Qualitative research guidelines. Setting Primary and emergency care in Sweden, focusing on the Stockholm region. Participants 7 (5 women) individuals with patient expertise, 1 (man) individual with carer expertise, 18 (12 women) individuals with clinical expertise. Results Three main categories reflecting strategies for applying safety-netting were developed: first, conveying safety-netting advice, which involves understanding patient concerns, tailoring communication and using appropriate modalities for communicating; second, ensuring common understanding, which involves summarising information, asking a teach-back question and anticipating questions post consultation; and third, supporting safety-netting behaviour, which involves facilitating reconsultation, helping patients and carers to navigate the health system and explaining the care context and its purpose. Conclusions Our study highlights the collaborative nature of safety-netting, engaging both the clinician and patient, sometimes supported by carers, in an iterative process. Adding to previous research, our study also emphasises the importance of anticipating postconsultation inquiries and facilitating reconsultation.
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