Johanna T.

How does digital health support patients/caregivers to become more active participants in their health care?

Patients/caregivers are the experts on their own health and their own body. When there are reputable sites for information about drugs or other medical information, they can follow up on treatment questions as they arise. Short visits with medical staff can never make up for the long term observation, information gathering and problem-solving often needed to truly understand health conditions, treatments and alternatives. Sites must be both reputable and in plain language.

Share an experience where digital health had an impact, or could have had an impact, on you as a patient, caregiver or family member.

Rapid cognitive decline after entering the RC “Care Centre” to recover from the flu puzzled us. We found new drugs had been prescribed for our Mom and researched them online. It was serotonin toxicity caused by citalopram (an SSRI) and tramadol (pain drug). The staff agreed to conduct a “drug holiday”. Mom recovered completely, cognitively, but loss of mobility meant returning to independent living was not possible. She died in 4 years blessing us rather than not recognizing us.

The theme of the 2016 Infoway Partnership Conference is “A Conversation About Digital Health”. How do you believe you can contribute to the conversation?

I have a library science background. I have worked with huge and highly interactive databases, including manipulating and migrating data. I believe this helps me understand better than many what is doable in technical terms. The frustration of knowing what could be done and the slowness of health systems to adopt universal data coding and regulations for interactive systems is huge. I would like to explore this issue further and look forward to a “fulsome discussion.”

How will you apply and share what you learn from Digital Health Week and the 2016 Infoway Partnership Conference?

I am involved, as a public member, with two research projects involving electronic medical records. I have interviewed software developers of both EMRs and the personal health records that are integrated with them. I want to keep this conversation going. I am working on the RxISK.org database project and involved with a research project at McMaster University looking at integrating medication review software with the OSCAR EMR and I am also in contact with Swedish developers of a medication app.