Patients' views about the use of their personal information from general practice medical records in health research: a qualitative study in Ireland

Clerkin, Pauline; Buckley, Brian S; Murphy, Andrew W.; MacFarlane, Anne

doi:10.1093/fampra/cms036

Cited by 31 publications

(77 citation statements)

References 15 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Earlier studies on this subject have found that generally the support for health research is high. [ 29 – 31 ] Privacy protection is a common concern, and the risks involving research use of personal data are recognized. [ 19 , 29 , 31 – 33 ] The results have, nevertheless, shown the public has been willing to allow the use of their information and to consider alternative methods for study-by-study consent.…”

Section: Introductionmentioning

confidence: 99%

Population attitudes towards research use of health care registries: a population-based survey in Finland

Eloranta

Auvinen

2015

BMC Med Ethics

View full text Add to dashboard Cite

BackgroundRegister-based research can provide important and valuable contributions to public health research, but involves ethical issues concerning the balance of public health benefits and individual autonomy. This study aimed to describe the opinions of the Finnish public about these issues.MethodsMail survey questionnaire sent to a random sample of 1000 Finns.ResultsParticipation proportion was 42 %, with 258 women and 160 men. The majority of the participants (61 %) were willing to provide their identifiable health information for research. Almost half of the participants (48 %) would, nevertheless, like to be informed when their information is used. A third (30 %) indicated no need for informed consent in register-based research, a similar proportion felt it should be obtained for every study, and 40 % thought it necessary in some situations, such as studies addressing a sensitive study topic. As for the best policy for obtaining consent, the majority (86 %) favoured broader consent methods: one consent covering a certain register or a research topic. Half of the participants (55 %) desired a required ethical evaluation from register-based research addressing a sensitive issue. Privacy protection was the most common concern for register-based research. More than half of the participants were either content with the current Finnish laws concerning register-based research or wanted to liberalize them to advance research.ConclusionsThe Finnish public is supportive of register-based research, but the requirement for informed consent divides opinions and many would at least like to be informed of the research use of their information.Electronic supplementary materialThe online version of this article (doi:10.1186/s12910-015-0040-x) contains supplementary material, which is available to authorized users.

show abstract

Section: Introductionmentioning

confidence: 99%

Population attitudes towards research use of health care registries: a population-based survey in Finland

Eloranta

Auvinen

2015

BMC Med Ethics

View full text Add to dashboard Cite

show abstract

“…An interesting finding in our analysis is the discussion raised by researchers in Ireland regarding the attitudes of the public and patients towards the use of PHR data for health research (Buckley et al, 2011;Clerkin et al, 2013). Early PHR adopters would appear to be more willing to share their medical data for research .…”

Section: Discussionmentioning

confidence: 87%

“…The authors in this set present PHR innovations and prototypes [e.g., Bonander and Gates (2010), Seldon (2014) and Seldon et al (2014) and address function and research issues on data safety and security, such as encryption [e.g., Li et al (2013) and Wang et al (2012)], medical data sharing and access control [e.g., Li et al (2010) and ]. An interesting sub-theme also discusses attitudes among the public and patients towards the use of PHR data for health research (Buckley et al, 2011;Clerkin et al, 2013).…”

Section: (F1) Operation Of Phrs: Innovations Prototypes Data Governmentioning

confidence: 99%

Personal healthcare records research: past, present and new dimensions

Koumaditis

Hussain

2018

IJHTM

View full text Add to dashboard Cite

When designed and managed properly, personal health records (PHRs) are valuable tools that can reform healthcare systems. Yet while the PHR literature covers multidiscipline cases on design requirements, implementations and early positive results, it also echoes concerns related to the undelivered potential and challenges tied to PHRs. Consequently, a vast body of literature exists with unclear themes and blurred lines between perception, realisation and outcome. This paper exposes dominant research themes in PHR research and aids the understanding of this developing field. Our bibliographic analysis of 524 papers published from 2000 to 2015 revealed a core set of 61 publications. Interesting identified themes include the operation of PHRs with emphasis on innovation, prototypes and governance, as well as the impact of PHRs on specific medical conditions, healthcare processes and sociotechnical issues. Design issues were also exposed focusing on user requirements, design elements and technologies and lessons learned through empirical cases.

show abstract

“…For example, would a victim of domestic abuse really be able to prevent the perpetrator from accessing their records to find out their history or what they may have said to the doctor about them [43]? However despite this, patients are generally positive towards the idea of data from their records (anonymous and identifiable) being used in research for the 'greater good' [44].…”

Section: Patients' Perspective On Hcps Access To Their Emrmentioning

confidence: 99%

EMR Access and Confidentiality Based on Patient and Hospital Staff Perspectives

Dhillon¹,

E²,

Akseer³

et al. 2018

TOPHJ

View full text Add to dashboard Cite

Introductions: The Electronic Medical Records (EMR) system is a longitudinal electronic record consisting of all the information relevant to a patients’ health and well-being, generated by at least one encounter in a healthcare setting. It can be accessed within an institution with multi-level accessibility based on authentication customized to the type of user. Since the EMR system potentiates an organised and holistic medical history specific to a patient, it enables medical professionals to deliver a higher quality of healthcare services. Aims: The aims of this study were to understand the global perspective of EMR and its implementation as well as to locate the gaps of knowledge that still existed in the understanding and definition of EMR amongst patients and hospital staff. Methods: All major bibliographic databases such as PubMed and Google Scholar and several specialist datasets such as PsycINFO, MEDLINE and EBSCOhost from the previous 10 years (2007-2017) were employed in our search. Paper citations which utilised a reference standard were incorporated for quality assessment. An initial search found 2700 articles however after factoring in the inclusion and exclusion criteria, only 78 articles were included in this review. Results: Our findings indicated a discrepancy between the expectation of patients and what was actually practiced. Patient concerns mainly involved easy access of healthcare professionals other than doctors to their EMR in addition to non-medical information. The assumption of confidentiality was expected to be maintained by indifference; however, a good face-to-face explanation cannot be substituted with control over content and access to EMR. In the event of a breach in patient confidentiality, lawsuits against healthcare providers will rise exponentially as patients are now well-informed and more empowered to ask questions regarding the care they are receiving and information being disclosed to other parties. Conclusion: Security of information can be attained with better modelling protocols, end-user training and refresher courses done on a regular basis. Finally, controls of access will need to be implemented via passwords and digital signatures.

show abstract

Patients' views about the use of their personal information from general practice medical records in health research: a qualitative study in Ireland

Abstract: Overall male and female patients of different ages are supportive of the use of their general practice records in health research and of general practitioners as data protectors.

Cited by 31 publications

References 15 publications

Population attitudes towards research use of health care registries: a population-based survey in Finland

Population attitudes towards research use of health care registries: a population-based survey in Finland

Personal healthcare records research: past, present and new dimensions

EMR Access and Confidentiality Based on Patient and Hospital Staff Perspectives

Contact Info

Product

Resources

About