Petersen, Carolyn

Objectives: With the increased use of participatory health enabling technologies, such as social media, balancing the need for health information with patient privacy and confidentiality has become a more complex and immediate concern. The purpose of this paper produced by the members of the IMIA Participatory Health and Social Media (PHSM) working group is to investigate patient needs for health information using participatory health enabling technologies, while balancing their needs for privacy and confidentiality. Methods: Six domain areas including media sharing platforms, patient portals, web-based platforms, crowdsourcing websites, medical avatars, and other mobile health technologies were identified by five members of the IMIA PHSM working group as relevant to participatory health and the balance between data sharing and patient needs for privacy and confidentiality. After identifying the relevant domain areas, our scoping review began by searching several databases such as PubMed, MEDLINE, Scopus, and Google Scholar using a variety of key search terms. Results: A total of 1,973 studies were identified, of which 68 studies met our inclusion criteria and were included in the analysis. Results showed that challenges for balancing patient needs for information and privacy and confidentiality concerns included: cross-cultural understanding, clinician and patient awareness, de-identification of data, and commercialization of patient data. Some opportunities identified were patient empowerment, connecting participatory health enabling technologies with clinical records, open data sharing agreement, and e-consent. Conclusion: Balancing between privacy and patient needs for health information in the age of participatory health and social media offers several opportunities and challenges. More people are engaging in actively managing health through participatory health enabling technologies. Such activity often includes sharing health information and with this comes a perennial tension between balancing individual needs and the desire to uphold privacy and confidentiality. We recommend that guidelines for both patients and clinicians, in terms of their use of participatory health-enabling technologies, are developed to ensure that patient privacy and confidentiality are protected, and a maximum benefit can be realized.

SummaryPrivacy is commonly regarded as a regulatory requirement achieved via technical and organizational management practices. Those working in the field of informatics often play a role in privacy preservation as a result of their expertise in information technology, workflow analysis, implementation science, or related skills. Viewing privacy from the perspective of patients whose protected health information is at risk broadens the considerations to include the perceived duality of privacy; the existence of privacy within a context unique to each patient; the competing needs inherent within privacy management; the need for particular consideration when data are shared; and the need for patients to control health information in a global setting. With precision medicine, artificial intelligence, and other treatment innovations on the horizon, health care professionals need to think more broadly about how to preserve privacy in a health care environment driven by data sharing. Patient-reported privacy preferences, privacy portability, and greater transparency around privacy-preserving functionalities are potential strategies for ensuring that privacy regulations are met and privacy is preserved.

Objectives: Connected healthcare is an essential part of patient-centred care delivery. Technology such as telehealth is a critical part of connected healthcare. However, exchanging health information brings the risk of privacy issues. To better manage privacy risks we first need to understand the different patterns of patient-centred care in order to tailor solutions to address privacy risks. Methods: Drawing upon published literature, we develop a business model to enable patient-centred care via telehealth. The model identifies three patient-centred connected health patterns. We then use the patterns to analyse potential privacy risks and possible solutions from different types of telehealth delivery. Results: Connected healthcare raises the risk of unwarranted access to health data and related invasion of privacy. However, the risk and extent of privacy issues differ according to the pattern of patient-centred care delivery and the type of particular challenge as they enable the highest degree of connectivity and thus the greatest potential for privacy breaches. Conclusion: Privacy issues are a major concern in telehealth systems and patients, providers, and administrators need to be aware of these privacy issues and have guidance on how to manage them. This paper integrates patient-centred connected health care, telehealth, and privacy risks to provide an understanding of how risks vary across different patterns of patient-centred connected health and different types of telehealth delivery.

AbstractPrecision medicine approaches disease treatment and prevention by taking patients’ individual variability in genes, environment, and lifestyle into account. Although the ideas underlying precision medicine are not new, opportunities for its more widespread use in practice have been enhanced by the development of large-scale databases, new methods for categorizing and representing patients, and computational tools for analyzing large datasets. New research methods may create uncertainty for both healthcare professionals and patients. In such situations, frameworks that address ethical, legal, and social challenges can be instrumental for facilitating trust between patients and providers, but must protect patients while not stifling progress or overburdening healthcare professionals. In this perspective, we outline several ethical, legal, and social issues related to the Precision Medicine Initiative’s proposed changes to current institutions, values, and frameworks. This piece is not an exhaustive overview, but is intended to highlight areas meriting further study and action, so that precision medicine’s goal of facilitating systematic learning and research at the point of care does not overshadow healthcare’s goal of providing care to patients.

The growing ability to collect and transmit patient-generated health data, also referred to as people-generated health data and patient-reported outcomes, is creating an opportunity to greatly improve how cancer survivors and their providers manage survivors’ health in the months and years following cancer treatment. Although cancer survivors are at higher risk of chronic health problems and early death as a result of cancer treatment, some experience difficulty identifying and receiving the care they need to optimize their health post-treatment. This article describes the challenges that cancer survivors and their providers face in managing survivors’ care and identifies several ways that using patient-generated health data can improve survivors’ and providers’ ability to manage survivorship care at the individual and population levels.