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- Hägglund, Maria, et al.
(författare)
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NORDeHEALTH – Learning from the Nordic Experiences of Patient Online Record Access
- 2023
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871.
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- The Nordic countries are forerunners in online record access (ORA) which has now become widespread. The importance of accessible and structured health data has also been highlighted by policymakers internationally. To ensure the full realization of ORA’spotential in the short and long term, there is a pressing need to study ORA from a cross-disciplinary, technical, 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, and introduce a Nordic-led research project that carries out the first of its kind, large-scale international investigation of patients’ ORA; NORDeHEALTH. We argue that the EHDS proposal will pave the way for patients to access and control third-party access to their electronic health records (EHRs). This will have implications within Europe and globally as it will further extend the boundaries for accessing and using EHRs for primary and secondary data use. Research such as that led by the NORDeHEALTH project is essential in guiding the design and implementation of solutions to meet the requirements of the EHDS proposal. Further international collaboration and research are needed to ensure that socio-technical and contextual factors are considered to ensure successful and secure implementation.
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- Hellbom, Maria, 1966-
(författare)
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Individual Support for Cancer Patients : Effects, Patient Satisfaction and Utilisation
- 2001
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The aims of this thesis are threefold: (1) To investigate cancer patients’ satisfaction with and utilisation of an Individual Psychological Support (IPS) intervention. (2) To evaluate the effects of Individual Support (IS), comprising IPS combined with Intensified Primary Health Care and Nutritional Support, on psychological distress and quality of life during the first year after diagnosis. (3) To explore to what extent aspects of quality of life and emotional functioning one year after diagnosis can be predicted by medical, psychological and socio-demographic factors at diagnosis. The analyses are based on data from the Support-Care-Rehabilitation project, using a prospective randomised design to compare four conditions: (1) Individual Support (IS) starting at diagnosis, (2) Group Rehabilitation (GR) starting three months later, (3) a combination of IS and GR, and (4) Standard Care (SC). The study sample consisted of patients newly diagnosed with breast cancer, colorectal cancer, gastric cancer or prostate cancer. A total of 481 patients were randomised and followed for 24 months.The IPS was an individually tailored, problem-focused intervention based on psychosocial oncology and cognitive behaviour therapy. Half of the patients receiving IPS had more than 2 sessions. Patients reporting that they had problems to address received more IPS sessions and reported more benefits of the intervention. Receiving an extensive medical treatment, young age, and not having someone besides the family to rely on in times of difficulties increased the odds of receiving tree or more sessions of IPS. The IS had limited impact on psychological distress and quality of life in intention-to-treat analyses. Additional analyses with stratification for baseline anxiety and/or depression levels suggested that for IS patients with higher levels of anxiety and/or depression, these problems continued to diminish below those of Control patients during the first year after diagnosis.Linear regression models were used to explore, one year after diagnosis, quality of life aspects indicative of rehabilitation needs. High levels of baseline anxiety and / or depressive symptoms were associated with lower levels of Emotional Functioning, and high self-rated well-being was associated with higher levels of Emotional Functioning. Extensive medical treatment and presence of comorbid conditions during the year before diagnosis predicted a low Global Quality of Life, whereas self-rated wellbeing predicted a high Global Quality of Life. Advanced disease, one or more comorbid conditions and high age were found to be associated with lower levels of Physical Functioning. A high level of activities outside the home during the year before diagnosis and high self-rated wellbeing were predictive of a better Physical Functioning. In conclusion, a large proportion of cancer patients offered IPS in conjunction with diagnosis and primary treatments seized this opportunity to discuss their situation, and perceived the experience as beneficial. Thus, offering newly diagnosed cancer patients these psychosocial support services may facilitate their situation.
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- Johansen, Maria, 1972, et al.
(författare)
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Inledning
- 2002
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Ingår i: Om text. En vänbok till Eva-Lena Dahl, (red.) Thomas Karlsohn och Maria Johansen. - Göteborg : Arachne/Institutionen för idé- och lärdomshistoria. - 9197329886 ; , s. 1-5
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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