What Do Patients Want?

Originally published in Health Information Management and Communications Canada magazine

Wednesday night is date night. Every Wednesday after work my wife and I walk to a nearby restaurant and enjoy a tasty meal and a lively chat. While this weekly event is not particularly noteworthy – many couples do the same – our topic of conversation is perhaps less common. Each week, for most of the meal, we explore the question: “What do patients want?” 

About 12 years ago Tracy was diagnosed with rheumatoid arthritis. Her life was dramatically and forever changed. 

Rheumatoid arthritis (RA) is an autoimmune disease. Tracy’s own immune system is attacking her joints, tendons, ligaments, bones, and muscles as though they were intruders. In addition, the medication she is taking to combat her RA leaves her vulnerable to viral and bacterial infections. Not a month goes by that Tracy is not battling a cold or some form of flu-like infection. 

A former technology executive and aspiring writer, Tracy decided a little over a year ago to use her communication skills and marketing experience to “speak for those whose voices are not quite loud enough and to provide perspective to those who want to listen.” 

Tracy’s first initiative is a blog entitled simply “This is my life” in which she offers a chronic disease patient’s perspective on a variety of topics. Not surprisingly, given my social media presence and professional focus on the health sector, I took an interest in Tracy’s work and she, in turn, solicited my input. 

As Tracy’s caregiver I am party to and, in some cases, an active participant in the patient experiences that influence her writing. This shared experience has transformed what started as basic mentoring into an active collaboration to explore and articulate the patient perspective. 

One of the early topics that Tracy and I explored was the patient perspective on digital health. Although she led and eventually sold an early Internet start-up and has edited all my published work, Tracy keeps telling me that she doesn’t understand what the term “digital health” means. 

As a digital health advocate, I was more than a little surprised to hear that Tracy doesn’t get “digital health.” The more I looked at the matter from a patient’s perspective and really thought about the words “digital” and “health”, I realized that her confusion might be warranted. 

In an April 2018 Forbes CommunityVoice™ post, cardiologist and engineer Dr. Joseph Smith succinctly captures my emerging views: 

“Disease processes rely on underlying complex biological, biochemical and neurological constituents that vary with time, temperature and myriad other continuous (read: analog) variables.” 

In other words, health is analog, not digital and the term “digital health” may be an oxymoron. At the very least, the term does not seem to resonate with patients. 

So, what do patients want? 

To prepare for their May 2017 annual gathering, the Council of Accountable Physician Practices (CAPP) sponsored focus groups across the country to compare patient and physician perceptions about what is most valuable in healthcare delivery. 

According to a June 2017 article by Dr. Robert Pearl, author of the bestselling book “Mistreated: Why We Think We’re Getting Good Healthcare—And Why We’re Usually Wrong,” the top three themes for both patients AND physicians cited in the focus groups were: 

1. Doctor-patient relationship 

2. Evidence-based medical treatment 

3. Care coordination 

Dr. Pearl notes that “neither patients nor doctors saw technology, including the electronic health record and online tools for patient engagement, as particularly important.” 

A U.K. National Health System survey of 200 patients in Buckinghamshire offers further insight into the nature of the relationship that patients want with their healthcare providers: 

To be informed clearly about their choices. 

To be listened to. 

To have their questions about their health answered. 

To take an active role in their healthcare decisions. 

To be treated with respect, empathy and compassion. 

If the phrase “digital health” doesn’t resonate with patients and technology is not viewed as particularly important, does technology have a role to play in the health sector? 

A McKinsey & Company report entitled “Healthcare’s digital future” contends that technology does have a role but notes that patients have been slow to adopt digital services because “existing services don’t meet their needs or because they are of poor quality.” 

The report further suggests that too much emphasis is placed on innovation when what patients really want is quite basic: “efficiency, better access to information, integration with other channels, and the availability of a real person if the digital service doesn’t give them what they need.” 

If I have learned nothing else as a caregiver it is that patients want to be heard, that they want people to really listen to what they have to say. They are willing to tell us what they want…we just need to engage them in conversation. 

You can check out my wife Tracy’s blog offering a patient’s perspective at themadnessmaven.ca

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