Access to historic individually identifiable health information: a multi-institutional survey of research institutions.

Abstract

Objective: Access to historic individually identifiable health information has been studied from a researcher perspective, but there has not been a comprehensive review of access policies at an institutional level to see if there is any consistency across institutions. The objective of this study is to gather preliminary information on these access policies and potentially identify similarities and gaps to inform future research.

Methods: This study employs an online survey for data collection about respondents' access policies and procedures at their institution. The final survey instrument consisted of 29 questions with a mix of multiple choice and free-text questions. The survey was distributed through listservs and posted in forums that targeted qualified participants.

Results: The survey received 36 responses, 21 of which met the criteria for inclusion in analysis. Some notable results are that covered entities are nearly equally split on when to open research collections, non-covered entities have a wide range of access policies, and all respondents were nearly equally split on how long it has been since they last updated their access policy.

Conclusion: While the number of responses was low for this study, the results identified areas that would benefit from further research and more robust study methods to potentially achieve a more standardized approach to access policies at research institutions.