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2.
BMC Med Inform Decis Mak ; 19(1): 175, 2019 Aug 30.
Artigo em Inglês | MEDLINE | ID: mdl-31470832

RESUMO

BACKGROUND: This study explores opinions and experiences of people with Parkinson's disease (PwP) in Sweden of using self-tracking. Parkinson's disease (PD) is a neurodegenerative condition entailing varied and changing symptoms and side effects that can be a challenge to manage optimally. Patients' self-tracking has demonstrated potential in other diseases, but we know little about PD self-tracking. The aim of this study was therefore to explore the opinions and experiences of PwP in Sweden of using self-tracking for PD. METHOD: A mixed methods approach was used, combining qualitative data from seven interviews with quantitative data from a survey to formulate a model for self-tracking in PD. In total 280 PwP responded to the survey, 64% (n = 180) of which had experience from self-tracking. RESULT: We propose a model for self-tracking in PD which share distinctive characteristics with the Plan-Do-Study-Act (PDSA) cycle for healthcare improvement. PwP think that tracking takes a lot of work and the right individual balance between burdens and benefits needs to be found. Some strategies have here been identified; to focus on positive aspects rather than negative, to find better solutions for their selfcare, and to increase the benefits through improved tools and increased use of self-tracking results in the dialogue with healthcare. CONCLUSION: The main identified benefits are that self-tracking gives PwP a deeper understanding of their own specific manifestations of PD and contributes to a more effective decision making regarding their own selfcare. The process of self-tracking also enables PwP to be more active in communicating with healthcare. Tracking takes a lot of work and there is a need to find the right balance between burdens and benefits.

3.
Stud Health Technol Inform ; 264: 1126-1130, 2019 Aug 21.
Artigo em Inglês | MEDLINE | ID: mdl-31438100

RESUMO

"Journalen" is a patient accessible electronic health record (PAEHR) and the national eHealth service for Sweden's citizens to gain access to their EHR. The Swedish national eHealth organization Inera, responsible for Journalen, created an inbox to receive voluntary user feedback about Journalen in order to improve the service from the user perspective. Based on voluntary user feedback via email. This study explored patients' experiences of using the national eHealth service and identified pros and cons. A mixed method content analysis was performed. In total, 1084 emails from 2016-2017 have been analyzed. 9 categories were identified, the most frequent ones related to questions about why some information was not accessible (due to regional differencies), feedback (including only positive or negative comments as well as constructive improvement suggestions), and emails about errors that user found in their record. These data can be successfully used to continuously improve an already implemented eHealth service.


Assuntos
Registros de Saúde Pessoal , Telemedicina , Registros Eletrônicos de Saúde , Retroalimentação , Humanos , Suécia
4.
J Med Internet Res ; 21(8): e13022, 2019 Aug 15.
Artigo em Inglês | MEDLINE | ID: mdl-31418421

RESUMO

BACKGROUND: Current health care systems are rarely designed to meet the needs of people living with chronic conditions. However, some patients and informal caregivers are not waiting for the health care system to redesign itself. These individuals are sometimes referred to as e-patients. The first generation of e-patients used the internet for finding information and for communicating with peers. Compared with the first generation, the second generation of e-patients collects their own health data and appears to be more innovative. OBJECTIVE: The aim of this study was to describe the second generation of e-patients through exploration of their active engagement in their self-care and health care. METHODS: Semistructured interviews were conducted with 10 patients with chronic conditions and 5 informal caregivers. They were all recruited through a Web-based advertisement. Data were analyzed according to the framework analysis approach, using the 3 concepts of the self-determination theory-autonomy, relatedness, and competence-at the outset. RESULTS: Study participants were actively engaged in influencing their self-care and the health care system to improve their own health, as well as the health of others. This occurred at different levels, such as using their own experience when giving presentations and lectures to health care professionals and medical students, working as professional peers in clinical settings, performing self-tracking, contributing with innovations, and being active on social media. When interaction with health care providers was perceived as being insufficient, the participants sought support through their peers, which showed strong relatedness. Competence increased through the use of technology and learning experiences with peers. Their autonomy was important but was sometimes described as involuntary and to give up was not an option for them. CONCLUSIONS: Like the first generation of e-patients, the participants frequently searched for Web-based information. However, the second generation of e-patients also produce their own health data, which they learn from and share. They also engage in the innovation of digital tools to meet health-related needs. Utilizing technological developments comes naturally to the second generation of e-patients, even if the health care system is not prepared to support them under these new circumstances.

5.
Stud Health Technol Inform ; 265: 48-53, 2019 Aug 09.
Artigo em Inglês | MEDLINE | ID: mdl-31431576

RESUMO

Community Health Workers (CHW) perform important healthcare and health promotion in many low and middle income countries. They are increasingly supported in their work by the use of mHealth. This study aims to explore how mHealth services can support the everyday work for CHWs when delivering home care in rural areas in South Africa. A single case study was performed, mapping CHWs workflow and investigating where and when CHW can be supported by mHealth services. Despite the very positive feedback from the CHWs and the fact that the studied mHealth solutions appears to support the majority of the important activities in the CHWs work process, the application is no longer in use. Financial and strategic decisions are behind the discontinuation of the project, further stressing the importance of taking all socio-technical dimensions into account when evaluating success or failure of implementation projects.


Assuntos
Telemedicina , Fluxo de Trabalho , Agentes Comunitários de Saúde , Assistência à Saúde , Humanos , África do Sul
6.
Stud Health Technol Inform ; 265: 54-59, 2019 Aug 09.
Artigo em Inglês | MEDLINE | ID: mdl-31431577

RESUMO

With an ageing population and limited resources in healthcare, many high-income countries such as Sweden see an increase in homecare and mobile work for healthcare professionals. In this case study, we explore how mHealth services can support the everyday work for healthcare professionals when delivering home care in rural areas in Sweden. The studied mHealth application had failed to be adopted among district nurses, despite a great expressed need for mobile tools. The results indicate that the mHealth solution did not live up the healthcare professionals' expectations in terms of providing the same functions as the regular electronic health record systems, and with poor integration into the existing eco-system of eHealth applications. In conclusion, in order for a mHealth application to be successfully implemented in a context where many digital services are already in use, it is not enough to support important activities in the current workflow. The mHealth application will need to be carefully integrated into the existing eco-system of healthcare applications to increase the chances of adoption.


Assuntos
Serviços de Assistência Domiciliar , Telemedicina , Assistência à Saúde , Humanos , Suécia , Fluxo de Trabalho
7.
Stud Health Technol Inform ; 265: 195-200, 2019 Aug 09.
Artigo em Inglês | MEDLINE | ID: mdl-31431598

RESUMO

Community health workers, led by trained nurses who are linked to a health facility are well positioned to play an important role in improving health of the communities in low and middle-income countries. The South African Department of Health has implemented various mobile health programmes to improve community-based services. This paper presents a component of a study that evaluates mHealth interventions in South Africa. The study was conducted in Pretoria urban and semi-urban areas, with the aim of understanding how community health workers experience mHealth technologies. Three focus group interviews were conducted and data analysis followed Thorne Interpretive Description framework. An overarching theme was that the mHealth application provided clinical content that empowered community health workers to develop confidence, higher efficacy, independent decisions making and experience higher social standing with their clients. This in turn, translated into informed clients. There is evidence of strengthened capacity in the use of mHealth technology and application of knowledge to provide an engaged client care. Functionalities in the application allowed timely exchange of information and decision support.


Assuntos
Fortalecimento Institucional , Telemedicina , Agentes Comunitários de Saúde , Humanos , Renda , África do Sul
8.
Int J Qual Stud Health Well-being ; 14(1): 1622354, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31122166

RESUMO

Purpose: In this qualitative interview study we investigated the experiences of family members to cancer patients. Our objective was to explore and to differentiate their needs from the needs of cancer patients. Methods: Five focus groups and six individual narrative interviews with 17 family members to cancer patients in Sweden were conducted and compared with 19 cancer patient interviews. Our analysis was inspired by classic grounded theory. Results: Family members to cancer patients expressed own morbidity connected to high stress levels and difficulties in recognizing own stress due to ongoing comparisons with the cancer patient. Family members were trapped in a momentary terror-like situation where they became their sick relative's safety net. A percieved inability to improve their loved one's well being contributed to a feeling of guilt. The longing for it all to end was encumbered with shame since the end included possible death. Conclusions: By recognizing cancer as a disease striking both body and relationships, family members are given precedence over their own struggles, differentiated from the patient's experiences. We define differences in needs between cancer patients and family members. Family members to cancer patients may be supported in developing balancing strategies towards less stress, increased safety and moments of contentment.

9.
BMC Med Inform Decis Mak ; 19(1): 95, 2019 05 03.
Artigo em Inglês | MEDLINE | ID: mdl-31053141

RESUMO

BACKGROUND: Patients and citizens need access to their health information to get a retrospective as well as a prospective view on their care and rehabilitation processes. However, patients' health information is stored in several health information systems and interoperability problems often hamper accessibility. In Sweden a national health information exchange (HIE) platform has been developed that enables information exchange between different health information systems. The aim of this study is to explore the opportunities and limitations of accessing and interacting with important health information through the Swedish national HIE platform. METHODS: A single case study approach was used for this study as an in-depth understanding of the subject was needed. A fictive patient case with a pseudo-name was created based on an interview with a stroke coordinator in Stockholm County. Information access through the national health information exchange platform and available service contracts and application programming interfaces were studied using different scenarios. RESULTS: Based on the scenarios created in this study, patients would be able to access some health related information from their electronic health records using the national health information exchange platform. However, there is necessary information which is not retrievable as it is either stored in electronic health records and eHealth services which are not connected to the national health information exchange platform or there is no service contract developed for these types of information. In addition, patients are not able to share information with healthcare professionals. CONCLUSION: The national Swedish HIE platform provides the building blocks needed to allow patients online access to their health information in a fragmented and distributed health system. However, more complex interaction scenarios allowing patients to communicate with their health care providers or to update their health related information are not yet supported. Therefore it is of great importance to involve patients throughout the design and evaluation of eHealth services on both national and local levels to ensure that their needs for interoperability and information exchange are met.

10.
J Med Internet Res ; 20(11): e278, 2018 Nov 01.
Artigo em Inglês | MEDLINE | ID: mdl-30389647

RESUMO

BACKGROUND: Internationally, there is a movement toward providing patients a Web-based access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens Web-based access to their medical information. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients' experiences of using PAEHRs in Sweden or Europe, more generally. OBJECTIVE: The objective of our study was to investigate patients' experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system. METHODS: A national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chi-square tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents. RESULTS: Overall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one's health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen. CONCLUSIONS: In this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way-several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients.

11.
J Parkinsons Dis ; 8(3): 441-446, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30124453

RESUMO

BACKGROUND: Individually tailored healthcare, in the form of precision medicine, holds substantial potential for the future of medicine, especially for a complex disorder like Parkinson's disease (PD). Patient self-tracking is an under-researched area in PD. OBJECTIVE: This study aimed to explore patient-initiated self-tracking in PD and discuss it in the context of precision medicine. METHODS: The first author used a smartphone app to capture finger-tapping data and also noted times for medication intakes. RESULTS: Data were collected during four subsequent days. Only data from the first two days were complete enough to analyze, leading to the realization that the collection of data over a period of time can pose a significant burden to patients. From the first two days of data, a dip in finger function was observed around the time for the second medication dose of the day. CONCLUSIONS: Patient-initiated self-tracking enabled the first author to glean important insights about how her PD symptoms varied over the course of the day. Symptom tracking holds great potential in precision medicine and can, if shared in a clinical encounter, contribute to the learning of both patient and clinician. More work is needed to develop this field and extra focus needs to be given to balancing the burden of tracking for the patient against any expected benefit.

12.
Stud Health Technol Inform ; 247: 336-340, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29677978

RESUMO

In Sweden, and internationally, there is an ongoing debate about the effects of national implementations of Patient Accessible Electronic Health Records (PAEHRs). The purpose of this paper was to describe the current situation in Sweden and compare this with the expectations on reasonable waiting time for information access of users of the Swedish PAEHR. Data were collected from publicly available resources regarding current implementation in the 21 county councils, contrasted with patient experiences, gathered from a national online survey. The results indicate that patients have high expectations on immediate access to information, while this varies greatly in implementation across Sweden.


Assuntos
Acesso à Informação , Registros Eletrônicos de Saúde , Internet , Registros de Saúde Pessoal , Humanos , Suécia
13.
Stud Health Technol Inform ; 247: 341-345, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29677979

RESUMO

In order to increase clinical trial participation, the reasons for participating need to be observed. Since there is rather inadequate information concerning how individuals such as patients, decides to participate in clinical trials semi-structured interviews have been done. Examining the use of EHR in clinical trials and co-creation of data, the result showed that it is important for the researches to have access to the patients' EHR and for the patients to contribute with their own ideas of research. Important aspects of further participation in clinical trials were that it should be fun and informative. The patients agreed on that the effort of participating could decrease with the use of electronically collection and self-reporting of data, e.g. through a patient portal.


Assuntos
Registros Eletrônicos de Saúde , Compreensão , Humanos , Pacientes
14.
Methods Inf Med ; 56(99): e123-e128, 2017 Oct 24.
Artigo em Inglês | MEDLINE | ID: mdl-29064509

RESUMO

BACKGROUND: New insights and knowledge in biomedical science often come from observation and experimentation. Methods traditionally used include self-experimentation, case reports, randomised controlled trials, and N-of-1 studies. Technological advances have lead to an increasing number of individuals and patients engaging in self-tracking. We use the term patient-driven N-of-1 for self-tracking performed with the explicit intention to disseminate the results by academic publishing. OBJECTIVES: The aim of the study was to: 1) explore the potential role for patient-driven N-of-1 studies as a tool for improving self-management in Parkinson's disease (PD) using the example of managing levodopa-induced dyskinesia (LID) with nicotine, and 2) based on this example; identify some specific challenges of patient-driven N-of-1 studies. METHODS: We used a placebo controlled patient-driven N-of-1 study with nicotine administered via e-cigarette to treat LID. The first author initiated and conducted the experiment on herself and noted her observations. The evaluations of the potential of N-of-1 for improving self-management of PD as well as the effects of nicotine on dyskinesia were based on the perception of the subject. During the planning and undertaking of the experiment, notes were made to identify challenges specific to patient-driven N-of-1 studies. RESULTS: The subject was able to distinguish a decrease of her LID from nicotine but no effect from placebo. The main challenges of patient-driven N-of-1 studies were identified to be associated with planning of the study, recruiting a suitable research team, making sure the data collection is optimal, analysis of data, and publication of results. CONCLUSIONS: Our study indicates that nicotine administered via e-cigarette may have an effect on levodopa-induced dyskinesia in individual patients with PD. The main contribution is however highlighting the work done by patients on a daily basis for understanding their conditions and conducting self-tracking experiments. More work is needed to further develop methods around patient-driven N-of-1 studies for PD.


Assuntos
Discinesias/tratamento farmacológico , Nicotina/uso terapêutico , Doença de Parkinson/tratamento farmacológico , Feminino , Humanos , Levodopa/efeitos adversos , Pessoa de Meia-Idade , Placebos
15.
Artigo em Inglês | MEDLINE | ID: mdl-29039366

RESUMO

In Sweden, and internationally, there is a movement towards increased transparency in healthcare including giving patients online access to their electronic health records (EHR). The purpose of this paper is to analyze the Swedish patient accessible EHR (PAEHR) service using a socio-technical framework, to increase the understanding of factors that influence the design, implementation, adoption and use of the service. Using the Sitting and Singh socio-technical framework as a basis for analyzing the Swedish PAEHR system and its context indicated that there are many stakeholders engaged in these types of services, with different driving forces and incentives that may influence the adoption and usefulness of PAEHR services. The analysis was useful in highlighting important areas that need to be further explored in evaluations of PAEHR services, and can act as a guide when planning evaluations of any PAEHR service.


Assuntos
Registros Eletrônicos de Saúde , Registros de Saúde Pessoal , Acesso à Informação , Assistência à Saúde , Humanos , Suécia
16.
FEBS Open Bio ; 7(6): 730-746, 2017 06.
Artigo em Inglês | MEDLINE | ID: mdl-28593130

RESUMO

In brain cells, glutamine transporters are vital to monitor and control the levels of glutamate and GABA. There are 11 members of the SLC38 family of amino acid transporters of which eight have been functionally characterized. Here, we report the first histological and functional characterization of the previously orphan member, SLC38A10. We used pairwise global sequence alignments to determine the sequence identity between the SLC38 family members. SLC38A10 was found to share 20-25% transmembrane sequence identity with several family members, and was predicted to have 11 transmembrane helices. SLC38A10 immunostaining was abundant in mouse brain using a custom-made anti-SLC38A10 antibody and colocalization of SLC38A10 immunoreactivity with markers for neurons and astrocytes was detected. Using Xenopus laevis oocytes overexpressing SLC38A10, we show that SLC38A10 mediates bidirectional transport of l-glutamine, l-alanine, l-glutamate, and d-aspartate, and efflux of l-serine. This profile mostly resembles system A members of the SLC38 family. In conclusion, the bidirectional transport of glutamine, glutamate, and aspartate by SLC38A10, and the immunostaining detected in neurons and astrocytes, suggest that SLC38A10 plays a role in pathways involved in neurotransmission.

17.
Health Informatics J ; : 1460458217704248, 2017 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-28434277

RESUMO

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.

18.
Stud Health Technol Inform ; 235: 146-150, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28423772

RESUMO

This paper describes how the Swedish national Health Information Exchange platform can be used to facilitate clinical research in the future. Different e-services for different user groups are being developed using a user-centered design approach. The main user groups are study participants, clinical researchers and healthcare professionals. The different e-services are based on an in-depth analysis of the clinical research process, and the main identified needs relate to recruitment of study participants, access to clinical data from different sources as well as improved tools for patients' self-reporting. The national Swedish HIE platform has the potential to enable a seamless connection between patients/citizens as study participants, health care professionals and everyday clinical work and clinical researchers in both academia and industry.


Assuntos
Pesquisa Biomédica/métodos , Troca de Informação em Saúde , Humanos , Aplicações da Informática Médica , Seleção de Pacientes , Autorrelato , Suécia
19.
AMIA Annu Symp Proc ; 2017: 1004-1013, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-29854168

RESUMO

Cancer is a major public health challenge in developing countries but the healthcare systems are not well prepared to deal with the epidemic. Health information technologies such as electronic medical records (EMRs) have the potential to improve cancer care yet their adoption remains low, in part due to EMR systems not meeting user requirements. This study aimed at analyzing the user requirements for an EMR for a cancer hospital in Uganda. A user-centered approach was taken, through focus group discussion and interviews with target end users to analyze workflow, challenges and wishes. Findings highlight the uniqueness of oncology in low-resource settings and the requirements including support for oncology-specific documentation, reuse of data for research and reporting, assistance with care coordination, computerized clinical decision support, and the need to meet the constraints in terms of technological infrastructure, stretched healthcare workforce and flexibility to allow variations and exceptions.

20.
Stud Health Technol Inform ; 245: 723-727, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-29295193

RESUMO

The number of eHealth services for patients is rapidly increasing worldwide. This paper describes the status of a very important eHealth service for patients in Sweden, the Patient Accessible Electronic Health Record (PAEHR). As many countries are facing an introduction of national eHealth services providing health information to the patients, lessons learned from Sweden may improve the deployment and use of PAEHRs and similar eHealth services. Challenges that remain in Sweden relate to local differences in the implementation that lead to fragmentation and unequal access to information. Initiatives have been taken to reconcile some of the problems, e.g. an updated national regulatory framework for PAEHR. To date, evaluations are often performed from a healthcare provider perspective, focusing on aspects that are considered important by healthcare professionals and decision makers. Based on experiences of this nation-wide implementation we argue for the need to also base evaluations of eHealth on the perspective of the patients.


Assuntos
Registros Eletrônicos de Saúde , Registros de Saúde Pessoal , Atitude do Pessoal de Saúde , Humanos , Suécia , Telemedicina
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