The current reactive model of healthcare is not sustainable. Instead, healthcare needs to be more patient-centered, where individuals are fully engaged to: preserve their health and wellness, manage their chronic conditions and adhere to treatment plans.

A first step to change this model is to enable individuals to easily access their health information. Fortunately, regardless of the ongoing healthcare data ownership debate, both data access rights and individuals’ interest in it are expanding.

Health information access: rights and interest

Developed geographies such as the United States (US) and the European Union (EU) already have in place legal frameworks that support the rights for individuals to access their healthcare data.

In the US, under the 1996 Health Insurance Portability and Accountability Act (HIPAA), individuals have a “legal, enforceable right to see and receive copies upon request of the information in their medical and other health records maintained by their health care providers and health plans.” Furthermore, as part of the 2014 Meaningful Use (Stage 2), capabilities of Electronic Health Record (EHR) should include providing patients with access to their own medical records.

In the EU, the recently enforced General Data Protection Regulation (GDPR) provides individuals the right to access all their personal data (including medical data). In addition, the cross-border healthcare Directive 2011/24/EU, supports patients’ rights to access their medical records (written or electronic) in their EU country of origin as well in any other EU country they receive(d) a medical treatment.

In parallel to these rights, consumers are increasingly interested in having online access to their health records. For example, in the US, 80% of the individuals who accessed their medical record online considered the information useful [1]. Moreover, more than half of the respondents to an European survey confirmed they wish to have online access to their health records [2].

Wait, not so easy!

Despite the existing rights and increasing interest, individuals are still struggling to access their health data online and providers to electronically share information with other providers.

In the US, a 2017 study showed that less than a third of individuals were offered access to their online personal health information by their healthcare provider [3]. In another study, only 30% of the assessed hospitals were able to find, send, receive and integrate electronic patient information from outside care providers [4].

The situation is not much different in the EU, where only a limited number of citizens were shown to have online access to their healthcare records, and the percentage of hospitals exchanging healthcare records electronically was shown to be stubbornly low (e.g. only 39% of hospitals exchange information electronically within the same country and only 4% of hospitals exchange information with hospitals in other countries) [5].

Barriers to healthcare data access

Two barriers have been put forward on why the market has so far not delivered EHRs that are easily interoperable across different providers, regions, or countries: a) misaligned incentives and b) inconsistencies in legal frameworks.

Incentives for common standards to enable easy exchange of information are not well aligned between EHR vendors nor between healthcare providers. First, EHR vendors may use proprietary solutions that prevent easy data transfer to another vendor’s system. Second, the transfer of a medical record from one provider to a new provider could mean losing that patient as customer.

On the legal side, the regulation of EHRs is either missing, insufficient or inconsistent between regions and/or countries. In the US, the 2009 HITECH program, which aimed at supporting the adoption of EHRs through meaningful use was unable to create a robust interoperability framework. In the EU, some regions/countries have set specific rules for electronic health records, while others rely on general data protection legislation. Furthermore, competent authorities perceive cross-border transfer of electronic health records as a challenge “that should be dealt with at the EU level and do not want to develop cross-border systems (e.g. through regional and bilateral agreements) that could potentially be in contradiction with the EU’s future actions” [6].

The attempted solutions

To address these barriers, solutions have been proposed to facilitate exchange of information between providers (e.g. Healthcare Information Exchanges (HIEs)) and between providers and patients (e.g. Patient Portals).

The goal of HIEs is to facilitate both electronic access and retrieval of isolated patient data to provide a safer, more timely and efficient patient-centered care. Therewith, the connectivity between different health care information systems could be improved.

However, these solutions have faced numerous challenges:

- Inconsistency in/variation between: 1) HIE levels of organization (e.g. state-wide, private, hybrid and regional) and 2) data storage architectures (centralized, decentralized and hybrid)

- Integration complexity with existing back-end EHR systems

- Lack of sustainable financial model post federal, state and local grants

The goal of Patient Portals is to serve as an online, 24-hour access, secure website/application to connect an individual to (part of) their health data. This includes both viewing laboratory test results, immunizations, medications, and allergies, as well as sending secure messages to their physician.

Challenges have been also been raised regarding patient portals:

- Patients must access multiple portals to interact with each individual healthcare provider or payer, since each offers its own solution

- Patient portals lack a focus on user-experience (e.g. login issues, poor design with complex interfaces, data displayed in small format, information often presented without any explanation, and lack of real-time notifications and alerts to patients) since they were developed to meet the “meaningful use” patient engagement minimum criteria [7,8]

In conclusion, both HIEs and Patient Portals are still affected by: 1) the misalignment of incentives hindering the full exchange of information between multiple providers, regions or countries and 2) the lack of a simple and engaging user experience that can result into long-term health gain for patients.

What could be the solution then?

The listed challenges allows us to consider Personal Health Records (PHR) as a solution that enables the online accessing of health data and the sharing of information with other providers electronically.

A PHR can be defined as ‘‘an electronic application through which individuals can access, manage and share their health information, and that of others for whom they are authorized, in a private, secure, and confidential environment’’ [9]. And while the “first generation” of PHRs depended on the manual filling of health information by the user (e.g. Google Health), a new “second generation” of PHRs is emerging that can electronically connect and exchange information with multiple information systems (contrarily to a Patient Portal which usually connects to a single provider or payer information system).

The use of this “second generation” PHRs can be compared to a spider weaving its web. As an individual interacts with different healthcare stakeholders, a virtual “thread” is created that links this individual to a new “surface”. On the long term, the more complete this “web” is, the easier it is for the individual to access the existing trail of information and to engage with the different stakeholders.

This new generation of PHRs addresses some of the challenges previously listed as follows:

- Single interface: via a single PHR application, individuals can access all their health data across multiple providers and payers

- EMR-vendor neutral: these PHRs are usually not tied to any single EHR vendor, which allows users to see different providers or switch payers (and still carry all their information with them)

- Open standards: serve as a counteracting force to the misaligned incentives of EHR vendors and contributes to the lowering of silos between healthcare providers and individuals

- User-centricity: consumers’ choice for PHRs will force vendors to compete and provide the best possible user experience, satisfaction and engagement and not just to “tick the box” of data sharing

- Third-party integrations: enable the integration of third-party solutions (chosen by the user) that provide a more personalized experience and support with long term engagement

Several initiatives are currently in place in the US and EU, supporting the rollout of this new generation of PHRs: in the US (e.g. Apple Health Records), Netherlands (e.g. MedMij) and UK (e.g. NHS Personal Health Records Adoption Toolkit).

Nonetheless, PHRs still have important obstacles that need to be addressed before main-stream adoption can occur:

- Common standards: even with the contribution of PHRs to the opening of EHR systems, further agreement is needed on common data standards

- Privacy and Security: PHRs vendors need to assure individuals of the privacy and security of the health data gathered, stored, transmitted, shared, and maintained

- Data-overload: more research is required to understand how the individual’s PHR data will be integrated with the physician’s workflow and whether that will create an overload of information; there is the additional fear of medical malpractice suits by patients as physicians may have a lot more information to sort through and may miss important facts when making medical decisions

- Accuracy of information: it is currently difficult to ensure that the information is accurate or complete which leads to challenging questions such as “who will be responsible for correcting inaccurate information that is received from referring physicians, for example?” or “who will be responsible for medical decisions made based on inaccurate or incomplete information?”

- Business models: the current assumption is that PHRs enable the electronic sharing of information which will benefit individuals by allowing for qualitatively better healthcare; however, it is still unclear how to create a sustainable business model around this benefit: will patients pay for these solutions or will payers reimburse them on the promise of future savings related to better patient engagement, adherence to care plans and behavior changes?

Conclusion

While the misalignment of incentives is challenging the roll-out of HIEs, the lack of a simple and engaging user experience is slowing the adoption of Patient Portals. Together, these barriers are delaying individuals’ engagement with their health information and discouraging a more patient-centered care model.

The new generation of PHRs, based on open technical specifications, will enable individuals to more easily use their personal data, share it with authorized healthcare professionals and make informed decisions about their health.

For these PHRs to succeed, it is important though that: 1) by themselves, or by easily connecting to third-party applications, they provide the valuable personalized experience that engages patients in their health, and 2) support and/or regulation from authorities is in place to ensure the framework for data exchange and integration standards.

Sources:

[1] https://www.healthit.gov/sites/default/files/briefs/oncdatabrief30_accesstrends_.pdf

[2] https://ec.europa.eu/digital-single-market/en/news/attitudes-towards-impact-digitisation-and-automation-daily-life

[3] Peacock S, Reddy A, Leveille S G, Walker J, Payne T H, Oster N V, and Elmore J G. Patient Portals and Personal Health Information Online: Perception, Access, and Use by US Adults. J Am Med Inform Assoc (2017)

[4] Holmgren A J, Patel V, Adler-Milstein J. Progress in interoperability: measuring US hospitals’ engagement in sharing patient data. Health Aff. (2017)

[5] https://ec.europa.eu/digital-single-market/en/news/european-hospital-survey-benchmarking-deployment-ehealth-services-2012-2013

[6] https://ec.europa.eu/health/sites/health/files/ehealth/docs/laws_report_recommendations_en.pdf

[7] Lazard A J, Watkins I, Mackert S, Xie B, Stephens K K, Shalev H. Design simplicity influences patient portal use: the role of aesthetic evaluations for technology acceptance. J Am Med Inform Assoc (2015)

[8] Kruse C S, Argueta D A, Lopez L, Nair A. Patient and provider attitudes toward the use of patient portals for the management of chronic disease: a systematic review. J Med Internet Res (2015)

[9] https://www.markle.org/sites/default/files/final_phwg_report1.pdf