“If patient engagement were a drug, it would be the blockbuster drug of the century and malpractice not to use it.” Leonard Kish

It’s increasingly acknowledged that engaging patients – and their caregivers – in digital health design is a necessary step in the development of digital technology that not only works but works for end-users in the everyday context of their lives.

Heretofore, too many developers assumed understood what patients needed, but in reality, many appeared to be motivated more by the cleverness of a new technology than actual improvements in health outcomes. 

Despite the progress the healthcare industry has made in bringing patients closer to the design process, there still exists a gap between including patients and including patients in ways that are purposeful and meaningful.

Digital Health is a disruptive and transformational approach to the delivery of healthcare, with a focus on engaging and empowering patients.

This means that transformation needs to start, not with the technology, but with the patient.

Technology alone cannot drive change.

To move beyond tokenistic consultation, or perfunctory inclusion, requires thoughtful consideration of the value patients bring to the design process.

It requires a true appreciation that lived experience is equal to other forms of knowledge, evidence, and expertise.

Clinicians may be experts in disease, developers in technology, but patients are the experts in their own lives. They know better than anyone what it takes to live with a condition day in and day out day. Ultimately, it is their insights that will help build better digital health solutions.

4 Principles of Patient Engagement – From the Patient Perspective

P1. Engage Us in Ways That Are Personally Meaningful

In an article entitled, Who Gives Us the Right to “Empower” Patients? , the authors point out that the health care system “continues to focus on engaging patients in behaviors that are deemed desirable from a mainly biomedical perspective: taking medications as prescribed, or maintaining a BMI below 25, for example. These desirable behaviors are considered universal, and it is assumed that all patients should engage in them to be optimally healthy. No space is left for individual patient goals, needs, desires, abilities, backgrounds, and other factors that make humans, and humanity, so rich and diverse.”

You cannot design digital health solutions without taking into account patient values and preferences and the context in which we live our lives.

In order to build solutions that solve real problems for patients, you need to use deep insight into the person in the context of their daily life. 

Healthcare is complex; it’s connected to a lot of things that have nothing to do with technology. A failure to recognise the complexity of health systems and the reality of patients’ lives will continue to lead to short-sighted health initiatives.

P2. Engage Us Where We Are – Not Where You Wish We Were

The most successful health applications are those that understand the real-life problems that come with living with a condition and creates solutions that meet real-life needs. If an application does not solve a problem for the patient, it will not be adopted.

As Amy Tenderich, founder of Diabetes Mine has said, “we will use tools that answer our questions and solve our problems. We will avoid tools that help us do what you think we should do and we won’t use tools that add to the work of caring for ourselves.”

Alex Butler, in an article entitled How To Build Successful Mobile Health Applications, wrote, “The question is not, ‘Does it solve a problem for the developer, or even the patient’s clinician?’ The real question is, ‘Does it help the patient directly? ’ If an application is in any way a hindrance, or adds any further time to the investment people must make into their healthcare, it will not be used.”

This principle is all about engaging with patients and their families to understand how they currently go about their lives.

It’s about understanding what makes them tick. It’s about making sense of these insights in order to identify gaps and opportunities for improvement.

Ultimately, it’s about creating great, relevant solutions as a result of this process. In 2020, from the patient’s perspective, the question is no longer ‘does this technology work?’, but ‘does it work for me and how I live my life every day?’.

P3. Engage Us Early in the Design Process

A report by Accenture revealed that just two percent of patients at hospitals are using proprietary health apps provided for them.

The report found that “hospital apps are failing to engage patients by not aligning their functionality and user experience with what consumers expect and need.” For example, only 11 percent of the apps surveyed offer at least one of three functions most desired by patients: access to medical records; the ability to book, change and cancel appointments; and the ability to request prescription refills

This staggeringly low figure represents an alarming waste of resources. Accenture concluded that hospital apps are failing to engage patients by not aligning their functionality with what patients actually need. 

The lesson here is that “build it and they will come” is a great line for a movie, but a terrible idea in healthcare design.

Patient engagement in design is still too often an afterthought, coming at the end of a process that has already been agreed.

If the app developers had co-designed with patients in the early development stage, they would be much more likely to produce an end product that patients would actually want to use. 

To be clear, co-design does not mean showing a finished product to someone and asking for ‘feedback.’ It’s about involving patients right from the start of the design process.

P4. Engage With “Real” Patients

Now, this might seem like I am stating the obvious but look at this tweet from Dr Danny Sands, which expresses the frustration of many who see time and again technology designed for the Quantified Self brigade rather than real patients.

In When the elephant in the room has no smartphone, a post on her blog, Heart Sisters, Carolyn Thomas, a heart attack survivor, talks about the difference between the Worried Well, that highly engaged community of technology mavens who enthusiastically track their personal data just because they can, and actual real live sick people coping with serious chronic disease every day who lack the energy/ability/will to commit to self-tracking in any kind of meaningful fashion.

P4. Engage Us As Humans First

Empathy, which strongly correlates to positive health outcomes, still matters even in a digital age. So we must ensure the construct of digital empathy is integrated into the technology in the future.

To quote Dr Jordan Shlain, “Patients are the reason we have a healthcare system. All us patients are human. If you ask any human who has fallen ill if they would like to get the best outcome the fastest..the answer is always yes. So, why do patients often not get the best outcome? (I’ll get back to this). In the milieu of technological advances, we often overlook the low-tech, analog human despite the fact that our brain is the most advanced technology on the planet.

The fundamental essence of digital health should not be exclusively technology-driven, although new and innovative tools do improve care. The human touch of healthcare should be at the center of these efforts.