How to empower patients with medical data
Think of every piece of medical information connected to your name. Every visit to the doctor, every laboratory result, even the prescription for that one medication you get recommended but never take - all of these pieces make up the picture of you as a patient.
Can the ability to access this health data --your health data-- make you a more informed patient? This is the question the Get My Health Data (GMHD) project set out to answer. We spoke to GMHD project coordinator Erin Mackay about how taking ownership of digital health records can help patients have more informed discussions with doctors, and empower those patients to be more involved in their treatment plan.
"Survey data shows that patients who have online access to their health information have greater knowledge of their health, they have better capabilities to communicate with their healthcare providers and they're even more motivated to do something to improve their health," Erin explained. "And I think that's really the Holy Grail of health care."
We also talked to Shelagh Maloney of Canada Health Infoway about the state of digital health data management in Canada. Shelagh said that while the law surrounding e-records varies slightly from province to province, many Canadians have been taking advantage of digital health data access.
According to recent survey numbers, 88 per cent of Canadians want to access their health information, but only about 8 per cent can do so right now. Another challenge, according to Shelagh, is the interpretation of health information.
"We found that most Canadians want access to their health information, but they're still worried that they won't be able to understand what these results say, 'I'm not a clinician, so I won't understand this information.' That's more of a learning opportunity between the patient and the clinician," she said.
GMHD's Erin Mackay said the same problem exists for patients south of the Canadian border.
"There is a difference between data and information," Erin explained. "Patients need help contextualizing the data they're receiving. They may be getting access to lab results or recommendations for follow-up they don't necessarily understand without the benefit of some context."
Both Erin and Shelagh mentioned a common concern among patients: the security of their medical information online.
This comes as no surprise. Imagine what kind of things our medical data --information so significant that we can't even decipher some of it on our own-- can potentially reveal about us if it ends up in the wrong hands.
The United States and Canada have laws that outline the necessary security measures for medical records. But in the past few years, we've been generating a brand new type of health data through personal fitness trackers like Fitbits and Jawbones.
Gillian Christie, who is a health innovation analyst at the Vitality Group, decided to address this issue by creating a series of guidelines for personalized health technology. The report is based on a global public consultation and it addresses things like interpretation, protection and scalability of personal health technology.