This is the second in a series of consumer health blogs that looks at the state of personal health records (PHRs) in Canada. This blog will put forth ideas for how to overcome some of the challenges outlined in the previous post.

The most significant challenge facing widespread adoption of PHR is that it requires manual data entry into one's PHR. Rather than automated data acquisition, manually entering data can be tedious or repetitive, and may act as a deterrent to PHR use.

Leading organizations like Cleveland Clinic that embrace best practice consumer engagement, have shown that a PHR platform significantly expands the value to patient consumers by automating the population of clinical information from the organization's electronic data stores and relieving the patient consumer from having to enter or re-enter this information through manual interaction with the PHR.     

In Canada, there have been significant investments made in electronic health record technology and digital health data accumulation. Until now, in every jurisdiction across the country, the primary use of this digital data, which acts as a basis for a historical longitudinal patient record, has been viewed by providers in support of their patients. The next positive step of integration is to enable the flow of existing digital health data into the consumer’s PHR. With participation of an integration partner such as Orion Health and their experience in many of Canada’s jurisdictions, it is realistic for health planners to envision a national consumer strategy where individuals can access and control their own longitudinal electronic health record within their PHR. 

Further cause for optimism, there are companies that offer data concentration services to compile data collected from personal consumer monitor and wearable devices such as Fitbit and Apple. PHRs can act as the single aggregate to save all of this personal data, which is valuable to avoid silos of data that are lost or misfiled over time. 

A secondary challenge relates to attempts by large IT vendors to develop technologies suitable for the PHR world. Many of these developments have been halted because it has proven difficult to make them work in an under-prepared marketplace. To overcome this challenge, we need to:

  • Leverage infrastructure investments in Digital Health, and in particular the investment in the EHR repositories and their rich data sets that have built up over the last decade e.g. PACS repositories, Laboratory repositories, transcribed reports.
  • Integrate PHR technology solutions as well as support clinical terminology mapping, mobile adaptable, data concentration for personally contributed data, and communication bridges for citizens to exchange information with others.
  • Deploy new technology such as SaaS and leverage the cloud to see economies of scale.

A third challenge is how to monetize patients' clinical and PHI data in pursuit of AI and cognitive computing applications in healthcare. Initiatives to overcome this challenge include:

  • Active public campaigns across Canada continuing this Fall during Digital Health Week to prepare public for expectations and value of future reusing their PHR data.
  • Policy workshops involving stakeholders including public members to understand mechanisms for anonymization and privacy protection models for the market and to arrive at reasonable messages on addressing data stewardship concerns. 

Added challenge to adopting PHRs involves the level of understanding a user has when given access to their digital health information such as the output of a clinical consult episode. 

To meet this challenge, we need trusted and reliable content that provides expanded understanding to patient consumers when viewing clinical information. Examples of knowledge content in use today are available in jurisdictions including BC (BC HealthLink) and AB (MyHealth.Alberta).

Further, challenges to adoption exist around the protection of data and providing secure and private access to PHR content.

To overcome this challenge, security and privacy protection is available through Validation and Authorization. Validating the patient consumer's digital identity is a primary concern, partnered with verification of permission to access digital clinical information that is associated with the Patient Consumer's identity e.g. insurance number. Almost all Canadians have a public health insurance card #, and many of these also have one or multiple private insurance card #s.

Another challenge is what actions to take in the event of a PHR breach by an external party.

The information held within a patient consumer's PHR is under the control and management of the individual, securing this information is not the responsibility of the clinicians or health delivery organization or health insurer. This includes both clinical information and personally contributed personal health information (PHI).  Consequently, it is reasonable to vision a time in the not distant future when all Canadians with PHR records under their control will be given option to elect to join in a national pan-Canadian PHR network.  A national 'voluntary' PHR is feasible from privacy perspective where a national EHR has been unsuccessful due to privacy legislative constraints across Canada.

Our final challenge lies in the archiving or refreshing of PHR data that is no longer meaningful or clinically significant. 

For clinical information, the PHR is not the source of truth, so changes to earlier generations of clinical reports need to be refreshed to supersede earlier results.  Retention of current clinical information and patient summaries are useful, and having a simple mechanism to update/replace this information without the citizen needing to manually perform data reconciliation is an important function of PHR integration. 

In a subsequent blog, we will explore PHR funding strategies, in other words to answer the question of ‘who pays?’.