Alberta Cancer Foundation

Patient Engagement: Staying connected


Two of my co-workers recently disclosed to me that they don’t have Facebook accounts, and I am now sitting in judgement. I am not proud of it, but I am.

My first thought was, “They must be the only two left standing!” As they listed their reasons for not succumbing to social media, I could hear a little voice inside me saying: “Keep up with the times” and “Get with the program.”

It was a taste of what patients and families experience when considering their healthcare and feeling frustrated with our inability to meet technological needs. Over the years I have heard many requests from our patient and family advisors for a patient portal, and have even heard our advisors say, “Keep up with the times.” A portal would include an online profile where a patient can look up appointments, see test results, provide information and updates to their providers, ask questions, access a navigation tool to help them find the location of their next appointment and even access patient education materials. To me, a non-techie but not-quite-Luddite, this seems like a reasonable request.

But this is one of those instances when I am reminded that my job in engagement requires some degree of systems intelligence. In order to broker the conversation between patients, families and the organization, I need to be able to understand the system implications behind such a seemingly simple request.

The first obstacle is the dangerous assumption that all patients and families have access to a computer. Some people might prefer regular mail. One thing I have learned is that the only generalization we can make when it comes to patient experience is that patients and families would like the opportunity to personalize their experiences as much as possible. In receiving our care, patients are vulnerable, and being able to have some control over that care can mean a lot to them. This means that, if some patients want paper records and some want high-tech apps, we need to have two functional systems. Don’t throw out those postage stamps just yet!

Here’s the next piece in a complex puzzle: our health care organization has more than 80 systems all containing pieces of secure patient information and some of the integral patient information is housed in the private sector too. I am told by my IT department that, even if we could get all of the information on one system, it would be tricky to display it in a logical, coherent manner, like a portal.

But the most compelling obstacle might be surprising: security and privacy. Recent security breaches shared in the media remind me that once information is available online, it can be stolen. Our teams of IT gurus are always working on keeping information safe but this is a key consideration when thinking about creating a patient portal.

In terms of privacy, we would need to consider whether all medical professionals would have access to see all patient information. What about a “proxy login” – can family members or those with power of attorney see a patient’s data? A patient may want a sensitive test done or for his or her diagnosis to be kept completely private and only available on a need-to-know basis. But once we have the information all together, how do we control access?

There are many unanswered questions, yet I can hear one of my wise patient advisors saying as she reads this: “If the U.S. can figure it out, I know we can, too.” This is truly the beauty of engagement: seeing the whole picture and all of the pieces of the puzzle. And a little dash of encouragement and patience goes a long way, too.

If I were a betting person, I would say that we will have a patient portal before my co-workers ever join the world of social media. Now that is something I can “like.”

Jessica Dollard is the patient-centred experience advisor on the Calgary Cancer Project. As a consultant in engagement and patient experience, as well as an actor, film and theatre producer, programmer, medical skills trainer and executive certified coach, she brings a creative background to this work.