International perspectives on sharing clinical data with patients

Highlights

• International subjects were interviewed about sharing clinical information with patients.

• Enabling patient access to data is occurring on an international scale.

• There is considerable variability of sharing and access across countries.

• Globally, efforts to improve patient access to data are growing.

Abstract

Objective

Engaging patients in their care has become a topic of increasing importance, and enabling patients to have access to their clinical data is a key aspect of such engagement. We investigated, on an international scale, the current state of approaches for providing patients with access to their own clinical information.

Methods

Individuals from 28 countries were invited to participate in a cross-sectional semi-structured interview. Interview questions focused on social and cultural influences that affected patient engagement activities, government support for current and planned initiatives, data ownership models, and technical issues.

Results

Interviews were conducted with individuals from 16 countries representing six continents. Respondents reported substantive initiatives for providing information to patients in the majority of countries interviewed. These initiatives were diverse in nature and stage of implementation.

Discussion

Enabling patient access to data is occurring on an international scale. There is considerable variability in the level of maturity, the degree of government involvement, the technical infrastructure, and the plans for future development across the world. As informaticians, we are still in the early stages of deploying patient engagement technologies and have yet to identify optimal strategies in this arena.

Conclusion

Efforts to improve patient access to data are active on a global-scale. There are many open questions about best practices and much can be learned by adopting an international perspective to guide future implementation efforts.

Introduction

Around the world, people are being encouraged to participate more actively in their healthcare. While individuals in most countries have been able to obtain copies of their medical records for many years, few regularly take advantage of this opportunity. Historically, medical records were kept on paper in disparate locations, thereby making the provision of copies to the patient an arduous task. With the recent proliferation of electronic health records (EHRs), there is much greater potential for patients to access their information [1], [2].

Dr. Warner Slack, an informatician at Harvard University, has commented that “the largest and least-used resource in medicine is the patient” [3]. To increase engagement and allow patients to more fully participate in their healthcare, they need access to their clinical data. Providing patients with their clinical data is associated with increased satisfaction, improved patient knowledge, control and self-care, and may result in better health outcomes [4], [5], [6].

How to best provide patients with access to their clinical data is unknown, particularly as diverse patient populations in various geographical locations may have different needs and capabilities. Previously, we analyzed the situation in the United States concerning the adoption of personal health records (PHRs). This paper found considerable variability in the types of clinical data and data-release timing within PHRs in the US [7]. In the current study, we examine how institutions in different countries around the world are sharing clinical information with patients. Other investigators have studied global patient engagement with a particular focus on components of engagement such as communication with doctors and shared decision-making [8]. They found wide country variation in this type of patient engagement by clinicians, while globally, engaged patients reported more positive views, higher-quality care, and fewer errors. This study is focused specifically on the concept of engaging patients in their care through the sharing of personal clinical information that is maintained by healthcare providers.