[Research and protection of personal data in Primary Care].
Ontology highlight
ABSTRACT:
SUBMITTER: Garrido Elustondo S
PROVIDER: S-EPMC7025257 | biostudies-literature | 2012 Mar
REPOSITORIES: biostudies-literature
Publications
[Research and protection of personal data in Primary Care].
Garrido Elustondo Sofía S Cabello Ballesteros Luisa L Galende Domínguez Inés I Riesgo Fuertes Rosario R Rodríguez Barrientos Ricardo R Polentinos Castro Elena E
Atencion primaria 20110729 3
Research is one of the fundamental functions that have to be carried out in Primary Care. The clinical information stored in different records arising from medical care is a basic tool for this activity. The use of personal data for the purposes of research is legitimate according to our laws; however, this information must be treated confidentially at all times. Two alternatives are available for this. One is to obtain the informed consent of the patient, and the other is to dissociate the hand ...[more]
Similar Datasets
Project description:Introduction:The European Union's (EU) General Data Protection Regulation (GDPR) was put in force on 25th May 2018. It is not known how many personal data protection requests the national authority in Croatia had received before and after GDPR, and how many of those were related to research. Materials and methods:We obtained data from the Croatian Personal Data Protection Agency (CPDPA) about requests/complaints related to personal data protection that were received specifically from academic/research institutions, specifically the number and type of all cases/requests between the years 2015-2019. Results:In 2018, CPDPA had a dramatic increase in the number of requests in the post-GDPR period, compared to the pre-GDPR period of the same year. In 2019, CPDPA received 2718 requests/complaints; less than in the year 2018. From 2015 to 2019, CPDPA received only 37 requests related to research. Conclusions:Very few requests about personal data protection from academic and research institutions in Croatia were submitted to the national Croatian data protection authority. Future studies could explore whether researchers have sufficient awareness and knowledge about personal data protection related to research, to adequately implement the GDPR regulations.
| S-EPMC7394253 | biostudies-literature
Project description:Data Access Committee EGAC00001002914
| EGAC00001002914 | EGA
Project description:The Protection of Personal Information Act (POPIA) 2013 came into force in South Africa on 1 July 2020. It seeks to strengthen the processing of personal information, including health information. While POPIA is to be welcomed, there are concerns about the impact it will have on the processing of health information. To ensure that the National Health Laboratory Service [NHLS] is compliant with these new strict processing requirements and that compliance does not negatively impact upon its current screening, treatment, surveillance and research mandate, it was decided to consider the development of a NHLS POPIA Code of Conduct for Personal Health. As part of the process of developing such a Code and better understand the challenges faced in the processing of personal health information in South Africa, 19 semi-structured interviews with stakeholders were conducted between June and September 2020. Overall, respondents welcomed the introduction of POPIA. However, they felt that there are tensions between the strengthening of data protection and the use of personal information for individual patient care, treatment programmes, and research. Respondents reported a need to rethink the management of personal health information in South Africa and identified 5 issues needing to be addressed at a national and an institutional level: an understanding of the importance of personal information; an understanding of POPIA and data protection; improve data quality; improve transparency in data use; and improve accountability in data use. The application of POPIA to the processing of personal health information is challenging, complex, and likely costly. However, personal health information must be appropriately managed to ensure the privacy of the data subject is protected, but equally that it is used as a resource in the individual's and wider public interest.
| S-EPMC8687565 | biostudies-literature
Project description:ObjectiveData protection authorities (DPAs) are independent public authorities supervising the application of the data protection law. There is one DPA in each European Union (EU) Member State. Workload and procedures used by European DPAs were analyzed via a cross-sectional study.ResultsDPAs from 13 countries participated: Austria, Bulgaria, Croatia, Estonia, Finland, Greece, Italy, Latvia, Liechtenstein, Lithuania, Norway, Romania, and Slovakia. Responding to opinion/guidance requests in DPAs was highly heterogeneous. Procedure types used by DPAs varied, from telephone-based advisory service in Norway to a formal legal opinion in Austria. The deadline for responding to the requests varied considerably in DPAs. The number of opinion/guidance requests sent by data controllers and processors, and the number of opinion/guidance requests and complaints sent by data subjects, increased from 2015 to 2018 when the General Data Protection Regulation (GDPR) came into full effect; it decreased in 2019. Few DPAs organized education about data protection for the research community. In conclusion, the procedures and workload of DPAs in the EU were highly variable. It is important to study these aspects further, as they may assist in tailoring future data protection policies and procedures at the EU level.
| S-EPMC10045515 | biostudies-literature
Project description:PurposePersonal continuity between patient and physician is a core value of primary care. Although previous studies suggest that personal continuity is associated with fewer potentially inappropriate prescriptions, evidence on continuity and prescribing in primary care is scarce. We aimed to determine the association between personal continuity and potentially inappropriate prescriptions, which encompasses potentially inappropriate medications (PIMs) and potential prescribing omissions (PPOs), by family physicians among older patients.MethodsWe conducted an observational cohort study using routine care data from patients enlisted in 48 Dutch family practices from 2013 to 2018. All 25,854 patients aged 65 years and older having at least 5 contacts with their practice in 6 years were included. We calculated personal continuity using 3 established measures: the usual provider of care measure, the Bice-Boxerman Index, and the Herfindahl Index. We used the Screening Tool of Older Person's Prescriptions (STOPP) and the Screening Tool to Alert doctors to Right Treatment (START) specific to the Netherlands version 2 criteria to calculate the prevalence of potentially inappropriate prescriptions. To assess associations, we conducted multilevel negative binomial regression analyses, with and without adjustment for number of chronic conditions, age, and sex.ResultsThe patients' mean (SD) values for the usual provider of care measure, the Bice-Boxerman Continuity of Care Index, and the Herfindahl Index were 0.70 (0.19), 0.55 (0.24), and 0.59 (0.22), respectively. In our population, 72.2% and 74.3% of patients had at least 1 PIM and PPO, respectively; 30.9% and 34.2% had at least 3 PIMs and PPOs, respectively. All 3 measures of personal continuity were positively and significantly associated with fewer potentially inappropriate prescriptions.ConclusionsA higher level of personal continuity is associated with more appropriate prescribing. Increasing personal continuity may improve the quality of prescriptions and reduce harmful consequences.
| S-EPMC10365882 | biostudies-literature
Project description:OBJECTIVE:To determine whether e/Tablets (wireless tablet computers used in community oncology clinics to collect review of systems information at point of care) are feasible, acceptable, and valid for collecting research-quality data in academic oncology. DATA/SETTING: Primary/Duke Breast Cancer Clinic. DESIGN:Pilot study enrolling sample of 66 breast cancer patients. METHODS:Data were collected using paper- and e/Tablet-based surveys: Functional Assessment of Cancer Therapy General, Functional Assessment of Cancer Therapy-Breast, MD Anderson Symptom Inventory, Functional Assessment of Chronic Illness Therapy (FACIT), Self-Efficacy; and two questionnaires: feasibility, satisfaction. PRINCIPAL FINDINGS:Patients supported e/Tablets as: easy to read (94 percent), easy to respond to (98 percent), comfortable weight (87 percent). Generally, electronic responses validly reflected responses provided by standard paper data collection on nearly all subscales tested. CONCLUSIONS:e/Tablets offer a valid, feasible, acceptable method for collecting research-quality, patient-reported outcomes data in outpatient academic oncology.
| S-EPMC2613994 | biostudies-literature
Project description:PurposeUK primary care provides a rich data source for research. The impact of proposed data collection restrictions is unknown. This study aimed to assess the impact of restricting the scope of electronic health record (EHR) data collection on the ability to conduct research. The study estimated the consequences of restricted data collection on published Clinical Practice Research Datalink studies from high impact journals or referenced in clinical guidelines.MethodsA structured form was used to systematically analyse the extent to which individual studies would have been possible using a database with data collection restrictions in place: (1) retrospective collection of specified diseases only; (2) retrospective collection restricted to a 6- or 12-year period; (3) prospective and retrospective collection restricted to non-sensitive data. Outcomes were categorised as unfeasible (not reproducible without major bias); compromised (feasible with design modification); or unaffected.ResultsOverall, 91% studies were compromised with all restrictions in place; 56% studies were unfeasible even with design modification. With restrictions on diseases alone, 74% studies were compromised; 51% were unfeasible. Restricting collection to 6/12 years had a major impact, with 67 and 22% of studies compromised, respectively. Restricting collection of sensitive data had a lesser but marked impact with 10% studies compromised.ConclusionEHR data collection restrictions can profoundly reduce the capacity for public health research that underpins evidence-based medicine and clinical guidance. National initiatives seeking to collect EHRs should consider the implications of restricting data collection on the ability to address vital public health questions.
| S-EPMC6618795 | biostudies-literature
Project description:ImportanceMore conservative prescribing has the potential to reduce adverse drug events and patient harm and cost; however, no method exists defining the extent to which individual clinicians prescribe conservatively. One potential domain is prescribing a more limited number of drugs. Personal formularies-defined as the number and mix of unique, newly initiated drugs prescribed by a physician-may enable comparisons among clinicians, practices, and institutions.ObjectivesTo develop a method of defining primary care physicians' personal formularies and examine how they differ among primary care physicians at 4 institutions; evaluate associations between personal formularies and patient, physician, and practice site characteristics; and empirically derive and examine the variability of the top 200 core drugs prescribed at the 4 sites.Design, setting, and participantsThis retrospective cohort study was conducted at 4 US health care systems among 4655 internal and family medicine physicians and 4 930 707 patients who had at least 1 visit to these physicians between January 1, 2017, and December 31, 2018.ExposuresPersonal formulary size was defined as the number of unique, newly initiated drugs.Main outcomes and measuresPersonal formulary size and drugs used, physician and patient characteristics, core drugs, and analysis of selected drug classes.ResultsThe study population included 4655 primary care physicians (2274 women [48.9%]; mean [SD] age, 48.5 [4.4] years) and 4 930 707 patients (16.5% women; mean [SD] age, 51.9 [8.3] years). There were 41 378 903 outpatient prescriptions written, of which 9 496 766 (23.0%) were new starts. Institution median personal formulary size ranged from 150 (interquartile range, 82.0-212.0) to 296 (interquartile range, 230.0-347.0) drugs. In multivariable modeling, personal formulary size was significantly associated with panel size (total number of unique patients with face-to-face encounters during the study period; 1.2 medications per 100 patients), physician's total number of encounters (5.7 drugs per 10% increase), and physician's sex (-6.2 drugs per 100 patients for female physicians). There were 1527 unique, newly prescribed drugs across the 4 sites. Fewer than half the drugs (626 [41.0%]) were used at every site. Physicians' prescribing of drugs from a pooled core list varied from 0% to 100% of their prescriptions.Conclusions and relevancePersonal formularies, measured at the level of individual physicians and institutions, reveal variability in size and mix of drugs. Similarly, defining a list of commonly prescribed core drugs in primary care revealed interphysician and interinstitutional differences. Personal formularies and core medication lists enable comparisons and may identify outliers and opportunities for safer and more appropriate prescribing.
| S-EPMC8283562 | biostudies-literature
Project description:BackgroundThe SARS-CoV-2 pandemic has highlighted once more the great need for comprehensive access to, and uncomplicated use of, pre-existing patient data for medical research. Enabling secondary research-use of patient-data is a prerequisite for the efficient and sustainable promotion of translation and personalisation in medicine, and for the advancement of public-health. However, balancing the legitimate interests of scientists in broad and unrestricted data-access and the demand for individual autonomy, privacy and social justice is a great challenge for patient-based medical research.MethodsWe therefore conducted two questionnaire-based surveys among North-German outpatients (n = 650) to determine their attitude towards data-donation for medical research, implemented as an opt-out-process.ResultsWe observed a high level of acceptance (75.0%), the most powerful predictor of a positive attitude towards data-donation was the conviction that every citizen has a duty to contribute to the improvement of medical research (> 80% of participants approving data-donation). Interestingly, patients distinguished sharply between research inside and outside the EU, despite a general awareness that universities and public research institutions cooperate with commercial companies, willingness to allow use of donated data by the latter was very low (7.1% to 29.1%, depending upon location of company). The most popular measures among interviewees to counteract reservations against commercial data-use were regulation by law (61.4%), stipulating in the process that data are not sold or resold (84.6%). A majority requested control of both the use (46.8%) and the protection (41.5%) of the data by independent bodies.ConclusionsIn conclusion, data-donation for medical research, implemented as a combination of legal entitlement and easy-to-exercise-right to opt-out, was found to be widely supported by German patients and therefore warrants further consideration for a transposition into national law.
| S-EPMC8672332 | biostudies-literature
Project description:BackgroundThe recent surge in clinical and nonclinical health-related data has been accompanied by a concomitant increase in personal health data (PHD) research across multiple disciplines such as medicine, computer science, and management. There is now a need to synthesize the dynamic knowledge of PHD in various disciplines to spot potential research hotspots.ObjectiveThe aim of this study was to reveal the knowledge evolutionary trends in PHD and detect potential research hotspots using bibliometric analysis.MethodsWe collected 8281 articles published between 2009 and 2018 from the Web of Science database. The knowledge evolution analysis (KEA) framework was used to analyze the evolution of PHD research. The KEA framework is a bibliometric approach that is based on 3 knowledge networks: reference co-citation, keyword co-occurrence, and discipline co-occurrence.ResultsThe findings show that the focus of PHD research has evolved from medicine centric to technology centric to human centric since 2009. The most active PHD knowledge cluster is developing knowledge resources and allocating scarce resources. The field of computer science, especially the topic of artificial intelligence (AI), has been the focal point of recent empirical studies on PHD. Topics related to psychology and human factors (eg, attitude, satisfaction, education) are also receiving more attention.ConclusionsOur analysis shows that PHD research has the potential to provide value-based health care in the future. All stakeholders should be educated about AI technology to promote value generation through PHD. Moreover, technology developers and health care institutions should consider human factors to facilitate the effective adoption of PHD-related technology. These findings indicate opportunities for interdisciplinary cooperation in several PHD research areas: (1) AI applications for PHD; (2) regulatory issues and governance of PHD; (3) education of all stakeholders about AI technology; and (4) value-based health care including "allocative value," "technology value," and "personalized value."
| S-EPMC8593818 | biostudies-literature