The PEARL – Odette Cancer Centre
Recently a colleague of mine emailed me a video clip from a TED Talk entitled E-Patient Dave. The story Davetells is a touching and compelling one but underlying his narrative are interesting insights into how patients are included in their care and how this needs to change. The messages he relays to his audience have many layers and resonate with patients, health care providers and policy makers alike but most importantly E-Patient Dave gives us a deep understanding of the new patient profile. This new patient is empowered, engaged and educated and as a leader developing strategies to meet these needs it is exciting and intimidating all at the same time. These patients are not only using various types of technology to learn about their conditions but they are establishing international networks to communicate, link and build knowledge about their disease and treatments. This is raising the bar for what patients expect in the context of education and is changing how the health care system conceives and designs patient education systems. No longer can we limit our thinking to basic education in the form of pamphlets or lecture style classes but we now need to take into account how people learn, what they want to know, where they want to learn and create interventions that consider the patient as an active part of the health care team.
This trend is clearly reflected in the influx of web sites such as www.patientslikeme.com , a health information sharing website for patients. This commercial platform is built for patients linking them to other patients with the same medical conditions to share both personal stories and health data about their conditions with the goal of exchanging ideas and developing new knowledge. These sites are controversial because of their business models but nonetheless they are being used by patients and at the very minimum it will be important for health care providers to understand how these sites are being used and the ways we can facilitate patients and their families with credible, evidence based patient education interventions that are customized to their learning style and include them as decision makers in their care.
Sunnybrook is delivering innovative solutions in this area with the newly launched Patient Education and Research Learning Centre and My Chart. We will continue to innovate, expand and design our education offerings for patients and their families always keeping in mind that it is no longer a one way interaction but one that is rich in content, innovative in delivery and empowers the patient.
Tamara Harth B.A. Hon, M.L.I.S
Program Manager Patient and Family Education /Regional Lead Patient Education Central North LHIN
Chair Cancer Patient Education Canada
