Taking control of your health data
Will the next generation of electronic health records be maintained by patients?
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A Personal Health Record can be a simple collection of medical appointment letters or discharge summaries stored in a binder. In recent years however, theyāve taken on a firmly digital format. Letās find out moreā¦
š¤·āāļø Problem
Electronic health records are maintained by health providers (one sided), and make it difficult for patients to contribute to their own healthcare information (incomplete).
š” Solution
Allow patients to become users of electronic health records. Let them contribute to their health record by allowing them to read and write their own health information.
š Terms
Definitions around health records generally reflects who owns the data.
Electronic Health/Medical Record (EHR/EMR). A systematised, longitudinal collection of the electronic health information of an individual. Contributed to and maintained by the institution which procured or developed it. āEpicā is one of the big players in this space.
Personal Health Record (PHR). A secure, usable and online record - managed by the patient and stores information about health and care. Can be ātetheredā (provided by a healthcare provider and closely linked to their existing systems) or āuntetheredā (provided by an independent company and less integrated with any particular healthcare institution).
Patient portals. Provides individuals with a view into their EHR (read capabilities) but with limited opportunity to write new data.
š History
The idea behind PHRs has been around for decades. Hereās some of the key milestones:
1956 - A guest editorial in JAMA described the āpersonal health logā - a concept that shares a lot with the PHRs of today:
āā¦a suitable booklet in the permanent possession of everyone, in which would be recorded some of the important aspects of his health record, encompassing items from his family history, and data on such things as his vaccinations and inoculations, his diseases and operations, his blood pressure, blood cell counts, and similar laboratory findingsā¦ā - Carl A. Dragstedt, M.D.
But it wasnāt until the 2000s that formal definitions for PHRs started arising.
2003 - The āMarkle Foundationā establish āThe Personal Health Working Groupā and provide the following definition for PHRs:
āā¦an Internet-based set of tools that allows people to access and coordinate their lifelong health information and make appropriate parts of it available to those who need it..ā - Markle Foundation
2005 - The āAmerican Medical Informatics Associationā start discussing issues surrounding PHRs and develop recommendations for improved adoption.
2006 - A paper by Tang et al provides formal definitions, characteristics as well as possible technical and system architectures that could be used for PHRs.
2012 - PHRs are defined as an ISO (International Organisation for Standardisation) standard. ISO standards ensure quality and safety in both products and services.
š¼ Use cases
PHRs can do a lot. Hereās a few examples of the functionality they often incorporate:
Transactions (appointment bookings, clinical trial opt in, repeat prescription requests)
Information resources and content
Person generated data (wearable data, mood diary, image upload)
Display of EHR data (care plans, test results, diagnoses, procedures)
Data sharing controls (decide who can see your health data)
Communication with health professionals (SMS, email, telemedicine)
Correspondence (discharge letters, appointment letters)
š„Ā Players
PHRs can take on a variety of forms. Some are deployed within integrated care systems, others focus on specific diseases or patient groups. Here are some of the key players:
Evergreen Life. UK based company trying to help people to take control of their health, wellbeing and medical records.
Patients Know Best. Another UK based PHR provider. Slick UI and strong NHS integration.
Get Real health. Provide āInstantPHRā as a ready to go solution for healthcare providers (including University Hospital Southampton NHS Foundation Trust).
Apple Health Records. Connecting patients to their EHR whilst allowing them to record their patient generated data through the Apple Health app.
Estonia. (Yes the country) -Ā has probably the highest uptake of PHRs with 95% of all health information digitised and patients able to log into their own record.
Mindwave. London based developer of digital health products. Building PHRs with 5 NHS trusts.
NHS. Starting to offer PHR services within the NHS app (currently limited in functionality and coverage). Helping people manage physical and mental wellbeing is part of NHS long term plan.
eRedbook. Digital version of the classic UK āredbookā. Allows parents to keep track of key infant milestones and access high quality health resources.
Ciitizen. Free service that will collect, summarise and provide access to your full medical records. Also help match people to relevant clinical trials.
Carezone. US based PHR service with a strong focus on medications and repeat prescriptions
Picnic Health. Part of Y Combinator in 2014, Picnic are a PHR service with a neat timeline function that helps people track procedures, visits and test results
Farmako. Describes itself as Indiaās first centralised health record system. Has a user facing app and health provider facing dashboard.
Medcorder. Focuses on interactions with healthcare professionals by allowing patients to record, transcribe and store their conversations with clinicians.
š Impact
When implemented well, PHRs can provide benefits and savings beyond the patient experience:
Environmental (reduced printing, less paper usage)
Economic (reduced hospital admissions, reduced in-person appointments)
Time (improved access to patient information for busy clinicians)
Patient experience and engagement (see this example of a PHR designed for men with prostate cancer)
Care continuity (reduction in siloed health information)
š® Predictions
Informatics standards. The adoption of established medical terminologies (SNOMED), ontologies (ICD-10), and standards for exchanging electronic health records (FIHR) will help PHRs integrate more widely with digital healthcare infrastructure.
Integrated care records. The trend towards more unified EHRs will continue and provide a more seamless experience for clinicians and patients. The distinction between EHR and PHR will lessen.
App market. Increased PHR adoption will lead to a marketplace of credible and reliable health apps that facilitate the collection of personal health data to be stored in PHRs.
AI and PHR. EHR data is fuelling exciting health research (see OpenSAFELY). Increased PHR use will provide new data to drive machine learning models and prediction tools.
Data quality and integrity. Some health data will need to be provided, verified or confirmed by healthcare providers (diagnoses, procedures etc). Patient-submitted health data might need to be limited to certain domains to help maintain accuracy and quality across the board.
Privacy. Previous attempts by Governments to make health data more accessible and usable have failed spectacularly (see care.data). PHRs have the benefit of being patient-driven but privacy by design principles should be baked into PHR products.
Adoption. Currently PHRs are mainly used by specific patient groups (e.g. inflammatory bowel disease). Interest in this space from tech companies like Apple will help wide adoption beyond these groups.
Blockchain. Current research is looking at applying blockchain technologies for PHR (see OmniPHR). The rationale is that it will facilitate health record integration, but whether distributed, decentralised systems are required is unlikely.
Wearable integration. Siloed wearable data will move from the confines of the app which records it and seamlessly integrate into PHR products.
š Opportunities
Accessibility. PHRs will be mainly accessed via smartphones. Any provider needs to follow app and web content accessibility guidelines to ensure everyone can access their PHR easily.
Equitable access. Similar to the above. Those who might benefit most from PHRs are likely to be the ones who might struggle to maintain or access one. Access to technology and digital literacy need to be considered.
Patient understanding. Improving access to health data has an educational aspect, allowing patients to learn more about their conditions and access high quality resources related to them.
Patient Reported Outcome Measures (PROMs). PHRs will allow more systematic use of PROMs. Providers should take the opportunity to track metrics that matter to patients.
Public health. Widespread adoption of PHRs provides exciting opportunities for new avenues of research, clinical trial recruitment, and if privacy can be maintained, disease outbreak monitoring.
Shared decision-making. PHRs have the potential to give patients a bigger stake in their healthcare. By making data more available, patients will likely feel more involved in their care.
š Links
The full editorial of the quote from JAMA used above. Dr Dragstedt was clearly ahead of his timeā¦
NHS Digital have a PHR Adoption toolkit. Helps organisations commission, or develop PHRs.