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

Abstract

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.

When Patient Engagement and Research Ethics Collide: Lessons from a Dementia Forum

“…The majority of patients were in favor of data sharing among researchers, especially within the field of AD research, although support for the sharing of personal information decreased with a higher risk of re-identifying the data [47][48][49][50][51][52][53][54]. Trinidad and colleagues [55] also found that both current and prospective research participants are generally supportive of the sharing of non-identifiable data among researchers.…”

Assessing Subject Privacy and Data Confidentiality in an Emerging Region for Clinical Trials: United Arab Emirates

“…Also, historically, human research studies in this region have not been properly identified as such, but rather considered "quality improvement initiatives," which are not subject to similar privacy and confidentiality regulations. The Institute of Medicine in the USA clearly states that "an activity should be considered research rather than quality assessment or improvement if it explores previously unknown phenomena; collects data beyond those routinely collected for patient care; compares alternative treatments, interventions, or processes; manipulates a current process; and the results are expected to be published for general societal benefit (Pullman et al, 2009 Abu Dhabi government to encourage medical research, including research conducted by medical trainees, has enabled a thought shift from quality initiatives to human research, with emphasis on subject privacy and data confidentiality .…”

Translation of research discoveries to clinical care in arrhythmogenic right ventricular cardiomyopathy in Newfoundland and Labrador: Lessons for health policy in genetic disease

“…Such issues have been raised in the United States, 15,16 and we have contributed to the discussion in Canada. 17 Health information privacy legislation is pending in our province, and it provides for some flexibility with regard to the management of genetic information. 18 The familial nature of genetic information presents special challenges in this regard, which are beyond the scope of the present discussion.…”