December 1, 2020
The Honourable Adrian Dix, M.L.A.
Minister of Health
Province of British Columbia
Dear Minister Dix,
With the support of its member organizations and individuals, the Board of the BC Rural Health Network (BCRHN) would like to share their views regarding the rights of a patient to control and protect their personal health record (PHR).
The BCRHN wishes to ensure that no commercial Electronic Medical Record (EMR)/Electronic Health Record (EHR) provider becomes the keeper of a patient’s comprehensive PHR. Whilst it is recognized that parts of a patient’s medical record will exist on a vendor’s EMR or EHR, to locate all of the patient’s medical data (the PHR) on the same platform raises questions about the unconsented use of this data, confidentiality and the ethical issue of who owns the data.
We would recommend that:
- PHRs be housed within a trusted, government controlled data bank
- patients have full access to their PHR
- there is a process for the patient to amend their PHR within limits
- the patient may determine the level of access given to others interfacing with their PHR
- anonymized PHR data could be shared with corporations for research purposes under strictly controlled contracts and the realized financial gain would flow back to the healthcare system of BC
- there is an obligatory two-way communication between the PHR and any healthcare provider that is involved with the patient, for example if a patient has an MRI, then the imaging facility has the ability to view the patient’s allergy list on their PHR, and must then communicate the MRI result back to the PHR
- relevant patient data housed with the PHR will be shared with external users on an as-needed basis in conjunction with a patient’s agreement, for example if the patient required emergency care in a hospital
We look forward to receiving your response to our concern and recommendations. We are open to discuss this issue with you at your convenience.
Sincerely,
Edward Staples, President
BC Rural Health Network