Health informatics. Principles and data requirements for consent in the Collection, Use or Disclosure of personal health information

2015 ◽  
Keyword(s):  
Health Information ◽  
Health Informatics ◽  
Personal Health Information ◽  
Personal Health ◽  
Data Requirements

scholarly journals Findings from 2017 on Consumer Health Informatics and Education: Health Data Access and Sharing

2018 ◽  
Vol 27 (01) ◽  
pp. 163-169 ◽  
Author(s):  
Pascal Staccini ◽  
Annie Lau ◽  
Keyword(s):  
Health Information ◽  
Data Sharing ◽  
Health Informatics ◽  
Data Access ◽  
Health Data ◽  
Demographic Characteristics ◽  
Personal Health Information ◽  
Consumer Health Informatics ◽  
Personal Health ◽  
Consumer Health

Objective: To summarize the state of the art during the year 2017 in consumer health informatics and education, with a special emphasis on sharing health data and accessing personal health information (PHI) from patients' and consumers' perspective. Methods: We conducted a systematic search of articles published in PubMed using a predefined set of queries which identified 228 potential articles for review. The section editors then screened these articles according to topic relevance and selected 15 candidate best papers for full review and scoring by a panel of international experts. Based on the scores and the reviews, four papers received the highest score and were selected in a consensus meeting as the best papers on health data access and sharing from consumers' and patients' perspective. Results: These four papers were categorised into the following topics: 1) data sharing for research and governance in privacy protection; 2) use of personal health information and individual privacy concerns; and 3) consumers' views and demographic characteristics regarding health data sharing and the use of digital health portals. Overall, it was surprising to see only a small number of papers reporting original research in this area. Conclusions: Patients understand the need for sharing information to facilitate best care and to enrich biomedical knowledge. When confronted with the reality of accessing information systems for their own information, patients are concerned about usability as well as privacy. Overall, there is a need for more emphasis on: 1) considering privacy as a feature defined by design; 2) using specific consent approaches and data sharing mechanisms for recruiting clinical trial participants; 3) taking into account socio-demographic characteristics when promoting consumer access to personal health information; and 4) defining indicators of high-quality care to incorporate healthcare professionals' level of caution when accessing patients' medical information and fostering patient trust in data exchange. Ultimately, privacy mechanisms should be part of the design process and not only be implemented when security has been breached and violated.

How Research Will Adapt to HIPAA: A View from Within the Healthcare Delivery System

2002 ◽  
Vol 28 (4) ◽  
pp. 491-502
Author(s):  
Mary L. Durham
Keyword(s):  
Health Information ◽  
Healthcare Delivery ◽  
Healthcare Providers ◽  
The United States ◽  
Personal Health Information ◽  
Personal Health ◽  
Business Associations ◽  
Electronic Information ◽  
Healthcare Delivery System ◽  
Institutional Review

While the new Health Insurance Privacy and Accountability Act (HIPAA) research rules governing privacy, confidentiality and personal health information will challenge the research and medical communities, history teaches us that the difficulty of this challenge pales in comparison to the potential harms that such regulations are designed to avoid. Although revised following broad commentary from researchers and healthcare providers around the country, the HIPAA privacy requirements will dramatically change the way healthcare researchers do their jobs in the United States. Given our reluctance to change, we risk overlooking potentially valid reasons why access to personal health information is restricted and regulated. In an environment of electronic information, public concern, genetic information and decline of public trust, regulations are ever-changing. Six categories of HIPAA requirements stand out as transformative: disclosure accounting/tracking, business associations, institutional review board (IRB) changes, minimum necessary requirements, data de-identification, and criminal and civil penalties.

Keeping Personal Health Information Safe

JAMA ◽  
2015 ◽  
Vol 313 (14) ◽  
pp. 1424 ◽  
Author(s):  
David Blumenthal ◽  
Deven McGraw
Keyword(s):  
Health Information ◽  
Personal Health Information ◽  
Personal Health
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