/pdf/invisible-wounds-of-war-psychological-and-cognitive-injuries-30tq5543fu.pdf

Invisible Wounds of War: Psychological and Cognitive Injuries, Their Consequences and Services to Assist Recovery

Background: In the current information age, the use of data has become essential for decision making in public health at the local, national, and global level. Despite a global commitment to the use and sharing of public health data, this can be challenging in reality. No systematic framework or global operational guidelines have been created for data sharing in public health. Barriers at different levels have limited data sharing but have only been anecdotally discussed or in the context of specific case studies. Incomplete systematic evidence on the scope and variety of these barriers has limited opportunities to maximize the value and use of public health data for science and policy. Methods: We conducted a systematic literature review of potential barriers to public health data sharing. Documents that described barriers to sharing of routinely collected public health data were eligible for inclusion and reviewed independently by a team of experts. We grouped identified barriers in a taxonomy for a focused international dialogue on solutions. Results: Twenty potential barriers were identified and classified in six categories: technical, motivational, economic, political, legal and ethical. The first three categories are deeply rooted in well-known challenges of health information systems for which structural solutions have yet to be found; the last three have solutions that lie in an international dialogue aimed at generating consensus on policies and instruments for data sharing. Conclusions: The simultaneous effect of multiple interacting barriers ranging from technical to intangible issues has greatly complicated advances in public health data sharing. A systematic framework of barriers to data sharing in public health will be essential to accelerate the use of valuable information for the global good.

/pdf/a-systematic-review-of-barriers-to-data-sharing-in-public-3i9nuh9yw8.pdf

A systematic review of barriers to data sharing in public health

Differential privacy has gained a lot of attention in recent years as a general model for the protection of personal information when used and disclosed for secondary purposes. It has also been proposed as an appropriate model for protecting health data. In this paper we review the current literature on differential privacy and highlight important general limitations to the model and the proposed mechanisms. We then examine some practical challenges to the application of differential privacy to health data. The most severe limitation is the theoretical nature of the privacy parameter epsilon. It has implications on our ability to quantify the level of anonymization that would be guaranteed to patients, as well as assessing responsibilities when a privacy breach occurs. The review concludes by identifying the areas that researchers and practitioners need to address to increase the adoption of differential privacy for health data.

http://www.tdp.cat/issues11/tdp.a129a13.pdf

Practicing Differential Privacy in Health Care: A Review

Differential privacy has gained a lot of attention in recent years as a general model for the protection of personal information when used and disclosed for secondary purposes. It has also been proposed as an appropriate model for health data. In this paper we review the current literature on differential privacy and highlight important general limitations to the model and the proposed mechanisms. We then examine some practical challenges to the application of differential privacy to health data. The review concludes by identifying areas that researchers and practitioners in this area need to address to increase the adoption of differential privacy for health data.

http://www.mathcs.emory.edu/~lxiong/pais12/pdf/PAIS12_Paper2.pdf

The application of differential privacy to health data

Qualitative study of the psychological experience of COVID-19 patients during hospitalization.

Background: Privacy concerns by providers have been a barrier to disclosing patient information for public health purposes. This is the case even for mandated notifiable disease reporting. In the context of a pandemic it has been argued that the public good should supersede an individual’s right to privacy. The precise nature of these provider privacy concerns, and whether they are diluted in the context of a pandemic are not known. Our objective was to understand the privacy barriers which could potentially influence family physicians’ reporting of patient-level surveillance data to public health agencies during the Fall 2009 pandemic H1N1 influenza outbreak. Methods: Thirty seven family doctors participated in a series of five focus groups between October 29-31 2009. They also completed a survey about the data they were willing to disclose to public health units. Descriptive statistics were used to summarize the amount of patient detail the participants were willing to disclose, factors that would facilitate data disclosure, and the consensus on those factors. The analysis of the qualitative data was based on grounded theory. Results: The family doctors were reluctant to disclose patient data to public health units. This was due to concerns about the extent to which public health agencies are dependable to protect health information (trusting beliefs), and the possibility of loss due to disclosing health information (risk beliefs). We identified six specific actions that public health units can take which would affect these beliefs, and potentially increase the willingness to disclose patient information for public health purposes. Conclusions: The uncertainty surrounding a pandemic of a new strain of influenza has not changed the privacy concerns of physicians about disclosing patient data. It is important to address these concerns to ensure reliable reporting during future outbreaks.

/pdf/physician-privacy-concerns-when-disclosing-patient-data-for-47u7euhrr8.pdf

Physician Privacy Concerns when Disclosing Patient Data for Public Health Purposes During a Pandemic Influenza Outbreak

Background: Findings and statements about how securely personal health information is managed in clinical research are mixed. Objective: The objective of our study was to evaluate the security of practices used to transfer and share sensitive files in clinical trials. Methods: Two studies were performed. First, 15 password-protected files that were transmitted by email during regulated Canadian clinical trials were obtained. Commercial password recovery tools were used on these files to try to crack their passwords. Second, interviews with 20 study coordinators were conducted to understand file-sharing practices in clinical trials for files containing personal health information. Results: We were able to crack the passwords for 93% of the files (14/15). Among these, 13 files contained thousands of records with sensitive health information on trial participants. The passwords tended to be relatively weak, using common names of locations, animals, car brands, and obvious numeric sequences. Patient information is commonly shared by email in the context of query resolution. Files containing personal health information are shared by email and, by posting them on shared drives with common passwords, to facilitate collaboration. Conclusion: If files containing sensitive patient information must be transferred by email, mechanisms to encrypt them and to ensure that password strength is high are necessary. More sophisticated collaboration tools are required to allow file sharing without password sharing. We provide recommendations to implement these practices. [J Med Internet Res 2011;13(1):e18]

https://www.ruor.uottawa.ca/bitstream/10393/20065/1/El_Emam_Khaled_2011_How_strong_are_passwords.pdf

Katherine Moreau

Papers

Physician Privacy Concerns when Disclosing Patient Data for Public Health Purposes During a Pandemic Influenza Outbreak

How strong are passwords used to protect personal health information in clinical trials