e-health literacy: Creating our best selves

PFSP Perspectives

September 6, 2017

Vincent M. Hanlon, MD | Assessment Physician, PFSP

Contributed by: Vincent M. Hanlon, MD | Assessment Physician, PFSP

I continue to think about Dr. Gadget’s (AKA: Dr. Wesley Jackson’s) provocative question at the end of his column in the March-April 2017 issue of Alberta Doctors’ Digest: “If you were going to invest now in your future best self, where would you put your time and your energy?” Dr. Jackson was quoting Dr. Robert Waldinger in his 2015 TED Talk about the Harvard Study of Adult Development.

Our best self is intimately dependent on the quality and strength of our relationships. Dr. Gadget gave some examples of how digital connectivity has the power to enhance or harm those relationships. His two-year-old grandson was able to call and surprise his grandma using touchscreen technology on his mom’s smartphone. On the other hand, a physician deeply immersed in the electronic medical record during an office visit may leave a patient feeling unseen and unheard.

What are we talking about here when we discuss e-health literacy? The College of Physicians and Surgeons of Ontario (CPSO), in their 2013 e-health Statement, gives us this definition: “The awareness of and ability to use relevant e-health tools, processes and resources that facilitate best practice and the provision of quality care.” The CPSO document references the College of Physicians & Surgeons of Alberta’s 2012 e-health Vision Statement.

Vancouver emergency physician Dr. Kendal Ho comes to mind when I think about e-health tools, processes and resources, AKA: TEKT (technology-enabled knowledge translation). Dr. Ho was the founding director of the Univeristy of British Columbia Faculty of Medicine’s e-health Strategy Office. After leading that initiative for several years, he now focuses his e-health research energies within the department of emergency medicine, and renamed the initiative digital emergency medicine.

His lines of inquiry include tele-health to engage rural practitioners, patient safety, and public engagement in information and communication technologies (social media, multimedia, the Internet and bio-sensors). Dr. Ho uses the word “mHealth” to refer specifically to the use of mobile phones in accessing and deploying these technologies. Smartphone health apps are one mammoth subset of e-health literacy. How mammoth? The European Commission published The myhealthapps directory 2015-2016. It features a few hundred health apps from over 100,000 available.

Dr. Ho has also read the demographic writing on the wall about older Canadians and their health care needs and wants. He encourages seniors to participate in the digital health revolution. To address that agenda item, Dr. Ho connects with small groups at seniors’ centers in Vancouver where he does presentations such as “An app a day keeps the doctor away.”

Dr. Ho’s e-health work is helping to cultivate what Dr. Eric Topol optimistically envisions as digitally empowered, connected, data-driven, participatory consumers of all ages building and living within a healthy culture (The Creative Destruction of Medicine, 2012). It won’t be long before Dr. Gadget’s wife will be looking to her grandson for some new health app recommendations.

We are talking primarily about information and communication: tons of information and dozens of ways to communicate. From the perspective of physician health, how does our degree of e-health literacy contribute to our well-being?

Earlier this year I was a companion and informal medical guide for my brother and his wife during their too brief encounter with Tim’s non-small cell lung cancer. As the “medical person” in my family of origin, I also volunteered to send out periodic progress reports to our seven siblings.

What digital devices and apps did I find helpful in fulfilling these roles? What communication tools did we use as a family to help us find a path with heart through this distressing time?

Things started with a voice call from Tim in November. He told me how short of breath he’d become when trying to run the bases playing slow pitch with his snowbird team in Surprise, Arizona. His wife, Nicki, and I also had our cell phones in hand at the time of his death. On a weekend in March, Tim deteriorated abruptly and somewhat unexpectedly. Nicki tried to call me. Inadvertently she FaceTimed me instead – the video image that appeared on the phone when I answered her call was Tim lying dead on their living room floor.

In between the beginning and the end, there was a lot information to access, decipher, store and share. I relied mostly on UpToDate for “the evidence.” In contrast, my “non-medical” brother and his wife visited numerous websites, especially in the first few weeks of the illness. They enlisted me to check out possible options, including a Mexican clinic and other sites promoting alternative therapies. I had to consciously restrict the amount of time I spent online each day. I also had to reconcile that what I might do if I were in Tim’s predicament was not what he and Nicki needed to hear or wanted to do.

For communicating with each other, we used texts, emails and a family sharing group on Telegram. We shared words of encouragement, our questions, uncertainties and sadness. We exchanged family photos but also digital images, scans, lab results and pictures of medical devices including a wireless pulse oximeter and a tunnelled PleurX catheter drain. After Tim’s return to Alberta from Arizona, our electronic calendars filled with appointments. Our lists of medical and nursing phone contacts grew and grew.

I used voice calls selectively. To share the initial shocking news of our brother’s diagnosis, I phoned rather than texted my siblings. As his illness progressed, Tim made and received fewer and fewer voice calls. He lacked the breath and emotional reserve for such calls. He depended on Nicki to make the essential ones. Tim observed that over the years it had been hard enough staying healthy; it was so much harder being sick. On his better days, he texted. He upgraded to the latest iPad two weeks before his death. Sharper pictures, he said.

I knew that Tim enjoyed listening to music; he was a teenager in the 60s. I started sending him a Song of the Day. He replied with his suggestions for me. Technology facilitated easy access to our selections. The music helped us express our fondness for each other when we weren’t able to use words. Every Breath You Take. Against the Wind. Just Breathe. Tomorrow is Another Day. The Waiting Game. Winter Has Me in its Grip. The music was our non-verbal conversation and a shared pleasure for the two of us. The music continues to be a source of consolation for me.

Did technology help us meet our information and communication needs? Did it make for better care for my brother and strengthen our relationship? Yes and no. It certainly helped us access and exchange information quickly. It sometimes let us down when we needed to connect with each other or with a particular person on Tim’s care team.

It’s about e-health but it’s not all about e-health. An indelible memory for me is accompanying my brother on the first day of winter to a follow-up visit with my specialist colleague. After exchanging a few sentences of light-hearted sports banter with us, my colleague leaned towards my brother, placed his hand on Tim’s knee and quietly shared with him the bad news about the bronchoscopy biopsies. Then he paused.

That physical gesture is a symbol of the human touch that is an indispensable part of the care we need and the care we need to provide. Given the unresolved technological tensions in our lives, how do we identify and sift digital necessities from digital distractions? What daily practices have we adopted to be able to show up repeatedly to each other in meaningful ways? In other words, how shall we continue to create our best selves – physicians, patients, colleagues, brothers, grandmothers and friends?

Dr. Gadget – back to you.

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