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Alix H.

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

Digital health tools are crucial in positive outcomes for the whole system; by that, I don’t necessarily mean the patient gets better or is cured. But the experience of the stakeholders in the process is vastly more positive if the patient and caregivers are engaged, active participants in the process. This helps patients feel empowered, and patients are a huge untapped resource in terms of what is happening between Doctor visits. Also, patients engage each other, digital tools help this.

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

I have participated in a pilot study in SK where I had access to my digital health records. This involved limited records in the context of the pilot, but I want to have copies of all records, and it saved me having to physically go to two or three different offices and fill out paperwork to request these copies. I could also enter information into these records for my doctors. I’ve also experienced an enormous support community through digital tools such as Twitter and blogging.

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

After my diagnosis with a brain tumour in 2012, I started blogging my experiences, and have since found many connections through the use of digital tools. I have interacted with many stakeholders in the engaged patient movement, and can bring what I have learned as well as my personal experiences of surgery and treatment over the past four years.

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

I have a large and connected social media and blog community, with which I will share my learning and insights. I also work in the healthcare sector, and would be able to share my learning on that front. Finally, within my own community, I work with cancer survivors and patients in person, and I would be pleased to share my experiences with them.