Extracting information from hospital records: what patients think about consent

Campbell, Bruce; Thomson, Helen; Slater, Jessica; Coward, C.; Wyatt, Katrina; Sweeney, Kieran

doi:10.1136/qshc.2006.020313

Cited by 34 publications

(50 citation statements)

References 21 publications

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“…Previous research indicates the public is generally convinced that the benefits of access to PHI outweigh privacy risks (Bright 2007;Campbell et al 2007). The results of the present study confirm that the public in general is not nearly as concerned about the sharing of their PHI for health research purposes as are various groups of professionals.…”

Section: Discussionmentioning

confidence: 99%

Sorry, You Can't Have That Information: Data Holder Confusion Regarding Privacy Requirements for Personal Health Information and the Potential Chilling Effect on Health Research

Pullman¹,

Buehler²,

Felt³

et al. 2009

hcpol

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This study, conducted in Newfoundland and Labrador, assessed the level of awareness, perceptions and concerns of healthcare providers, health researchers, data managers and the general public about the collection, use and disclosure of personal health information (PHI) for research purposes. Data collection involved surveys and followup focus groups with participants. Results indicate a poor understanding generally with regard to privacy rights and responsibilities. Many professionals are unfamiliar with the legislative environment for PHI, particularly as it pertains to the access and use of PHI for research purposes. Lack of familiarity with basic requirements for patient-based research, coupled with heightened sensitivity to privacy issues owing to various federal and provincial regulatory initiatives, could have a chilling effect on health research. Importantly, our results indicate that the public is much less concerned about the use of their PHI for health research purposes than are professionals who collect, store and share it. RésuméLa présente étude, menée à Terre-Neuve-et-Labrador, évalue le degré de sensibilisation, de perception et de préoccupation des fournisseurs de soins de santé, des chercheurs, des gestionnaires de données et du grand public au sujet de la collecte, de l'utilisation et de la divulgation des renseignements personnels sur la santé (RPS) à des fins de recherche. Les données ont été recueillies au moyen de sondages et de groupes de discussion auprès des répondants. Les résultats indiquent une faible compréhen-sion générale des droits et des responsabilités au sujet des renseignements personnels. Plusieurs professionnels ne sont pas familiers avec le contexte législatif des RPS, particulièrement en ce qui concerne l' accès et l'utilisation des RPS à des fins de recherche. Le manque de connaissances des exigences de base pour la recherche axée sur les patients, conjugué à la sensibilité des questions touchant aux renseignements personnels en raison des nombreux règlements fédéraux et provinciaux, pourrait causer des revers pour la recherche sur la santé. De plus, nos résultats indiquent que le public est beaucoup moins préoccupé par l'utilisation de leurs RPS à des fins de recherche que ne le sont les professionnels qui recueillent, gèrent et partagent ces renseignements.

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Section: Discussionmentioning

confidence: 99%

Sorry, You Can't Have That Information: Data Holder Confusion Regarding Privacy Requirements for Personal Health Information and the Potential Chilling Effect on Health Research

Pullman¹,

Buehler²,

Felt³

et al. 2009

hcpol

View full text Add to dashboard Cite

show abstract

“…Lastly, the majority of patients who have undergone genetic testing believe that patients should bear the responsibility of revealing test results to at-risk family members. In the same line it is stated that very limited research has examined patients' perception on sharing of anonymized health records, perhaps 10 with exception of more recent studies that examine patients perception about consent to health information use for other than their own care (Bansal, et al 2007;Campbell et al 2007). …”

Section: A Theoretical Backgroundmentioning

confidence: 99%

“…Campbell et al (2007) also showed that significant numbers of patients are neutral to their health related information disclosure. In connection to this, Angst et al (2006) investigated divergence of perception among patients toward different types of personal health record systems, including paper based, personal computer based, memory devices, portal and networked PHR, which are in the increasing order of technological advancement.…”

Section: A Theoretical Backgroundmentioning

confidence: 99%

Patient's perception of health information security: The case of selected public and private hospitals in Addis Ababa

Tesema

Medlin

Abraham

2010

2010 Sixth International Conference on Information Assurance and Security

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Abstract-Information security in health sector is getting growing attention. In this connection, patient's perception about different aspects of health sector is worth considering. In this research, attempt has been made to assess and analyze patient's perception of health information security at some selected public and private hospitals in Addis Ababa, Ethiopia. Quantitative research approach using questionnaire as an instrument was employed in an attempt to empirically address the topic. The research result reveals that patient's perception of health information security is generally low. Major determinant factors for their perception include their educational background, age and general awareness. It is also worth mentioning that patient's perception has strong implication on the service delivery and satisfaction of both service providers and patients themselves

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“…For this reason, in order to establish a successful biobank, maximizing public trust is critically important in this process. 3 With a greater reliance on sample-derived data for research in molecular medicine and clinical care, improved standards and informatics for sample procurement, storage, and analysis are necessary to maximize the value of tissue collection for research participants, investigators, academic and medical institutions worldwide.…”

Section: Introductionmentioning

confidence: 99%

The Establishment of an ISO Compliant Cancer Biobank for Jordan and its Neighboring Countries Through Knowledge Transfer and Training

Barr

Souan

MacGabhann

et al. 2014

Biopreservation and Biobanking

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Research studies aimed at advancing cancer prevention, diagnosis, and treatment depend on a number of key resources, including a ready supply of high-quality annotated biospecimens from diverse ethnic populations that can be used to test new drugs, assess the validity of prognostic biomarkers, and develop tailor-made therapies. In November 2011, KHCCBIO was established at the King Hussein Cancer Center (KHCC) with the support of Seventh Framework Programme (FP7) funding from the European Union (khccbio.khcc.jo). KHCCBIO was developed for the purpose of achieving an ISO accredited cancer biobank through the collection, processing, and preservation of high-quality, clinically annotated biospecimens from consenting cancer patients, making it the first cancer biobank of its kind in Jordan. The establishment of a state-of-the-art, standardized biospecimen repository of matched normal and lung tumor tissue, in addition to blood components such as serum, plasma, and white blood cells, was achieved through the support and experience of its European partners, Trinity College Dublin, Biostór Ireland, and accelopment AG. To date, KHCCBIO along with its partners, have worked closely in establishing an ISO Quality Management System (QMS) under which the biobank will operate. A Quality Policy Manual, Validation, and Training plan have been developed in addition to the development of standard operating procedures (SOPs) for consenting policies on ethical issues, data privacy, confidentiality, and biobanking bylaws. SOPs have also been drafted according to best international practices and implemented for the donation, procurement, processing, testing, preservation, storage, and distribution of tissues and blood samples from lung cancer patients, which will form the basis for the procurement of other cancer types. KHCCBIO will be the first ISO accredited cancer biobank from a diverse ethnic Middle Eastern and North African population. It will provide a unique and valuable resource of high-quality human biospecimens and anonymized clinicopathological data to the cancer research communities world-wide.

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Extracting information from hospital records: what patients think about consent

Cited by 34 publications

References 21 publications

Sorry, You Can't Have That Information: Data Holder Confusion Regarding Privacy Requirements for Personal Health Information and the Potential Chilling Effect on Health Research

Sorry, You Can't Have That Information: Data Holder Confusion Regarding Privacy Requirements for Personal Health Information and the Potential Chilling Effect on Health Research

Patient's perception of health information security: The case of selected public and private hospitals in Addis Ababa

The Establishment of an ISO Compliant Cancer Biobank for Jordan and its Neighboring Countries Through Knowledge Transfer and Training

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