Why co-creation of digital health solutions with users is the future

The dictionary definition of the noun “patient” typically includes the word “recipient.”¹ The implication is that it’s a passive role. Patients “receive” treatment, medication, instructions, etc. Healthcare professionals are the active entities in the equation, determining short- and long-term care plans, doling out medication and developing solutions for managing symptoms.

But lately, we’ve seen a shift in how the wider healthcare industry views this dynamic. 

Irene Kanter-Schlifke
General Manager of Patient Solutions at Biogen Digital Health

The growing trend of "co-creation" in the field of digital medicine²— which involves putting all stakeholders, including future users, in the metaphorical room during the development of healthcare solutions — offers a glimpse into a more equitable future.

People tend to be more invested in products they've had a hand in developing, which makes co-creation in the context of healthcare particularly promising.³ For those living with diseases and chronic conditions — as well as their caregivers and families — it could mean not only greater agency, but hopefully also better outcomes.⁴

It's important to distinguish between "patient involvement" and bona fide "co-creation." Involvement is vague; the term runs the risk of becoming a tick-box exercise that companies employ as a marketing tactic. But co-creation is decidedly more active and specific. It means direct, ongoing input from the end users who will be interacting with solutions in the future. It involves seeking user feedback throughout every phase of a product's development, from conceptual design to testing to roll out.

In many industries, this has been the status quo for some time. Pressure-testing, beta roll-outs, focus groups and feedback forms are the norm when it comes to building apps, electronic devices and other consumer-facing technologies.

But in healthcare, the concept has taken longer to catch on. This is in part due to the industry's complexities and regulatory landscape. It's more logistically challenging to include hundreds of people with diabetes in developing an insulin-monitoring device, for instance, than it is to A/B test features of a productivity app like Evernote.

With the rise of emerging technologies and the resulting explosion of health data, however, healthcare and pharmaceutical companies are now considering patient buy-in to a greater extent.

In the past, healthcare providers and institutions were considered the primary stakeholders and decision makers in healthcare. Today, however, a growing cohort understands that putting patients at the center of the process is key to addressing real — not just perceived or assumed — user needs. This evolving mindset pertains to both rare diseases and management of more common conditions like migraine, mental health or cardiovascular disease. The reality is that in our digital age, if consumers can't find a suitable solution via conventional healthcare, they'll go elsewhere.

Co-creation can help identify these gaps. At the same time, it has the potential to improve transparency and co-ownership across all aspects of the healthcare continuum. For users, this could lead to better quality of care — and quality of life — while lifting the veil on an industry that's often considered opaque.⁵

As someone who has worked in neuroscience for close to two decades, I've observed firsthand how there can be a gap between neuroscientific technological achievement and what happens in the day-to-day practices of clinical neurologists. Neurologists are extremely busy and shifting processes to encompass new technologies takes time.

My latest work has focused on bridging this gap through patient-centric co-creation. When healthcare providers can see the benefits of new digital health solutions through clear use cases involving patients with whom they've already built relationships — and strengthen those relationships in the process — it can make a genuine impact on how they run their practice and the technologies they choose to integrate into it.

The below use cases are just two areas in which co-creation holds significant potential.

Better prioritization of symptom management: There can be disconnect between healthcare providers and patients when prioritizing which symptoms of chronic disease to treat first. In my past work on Huntington's disease, for example, a condition that affects cognitive, behavioral and motor aspects, I heard doctors talk about addressing motor symptoms first. But after sitting down and speaking with families living with the disease, I realized this isn't typically their primary concern; they often care more about curbing behavioral symptoms of the disease, such as aggression and impulsivity. Very specialized care providers may understand this different perspective already. More broadly adopted co-creation of care plans or solution of any sort would help all parties, beyond those most closely involved, to prioritize which symptoms to treat.

Another classic example in this vein is the intense and highly fluctuating fatigue experienced by people living with Multiple Sclerosis (MS). While having considerable impact on Quality of Life, fatigue is not enough considered as a disabling MS symptom and it's often thought of as difficult to treat. Behavioral change programs may help people better manage MS-related fatigue via simple habit shifts.  But merely providing solid information won't spark better⁶ outcomes overnight. Engaging digital tools that provide data-based insights and health coaching on individual needs basis, however, might make a difference - provided they're co-created with users.

Monitoring and data collection: Thanks to digital transformation, our world is awash in data. When parsing this information for healthcare purposes, it's critical that providers and patients alike understand which insights are actually useful, and how they can be used to optimize the individual care experience. All parties must be clear on: If we're collecting data, what are we tracking, and why? What makes sense from a user perspective? How is the data most effectively displayed? Is it accessible for all stages of disease progression? In many cases, only the users themselves can provide answers to these questions.

A final important point is that co-creation takes place not in controlled clinical trial settings, but crucially, in real-world environments. We must switch up the current dialogue that dictates patients to manage their lives around a disease instead of the other way around. Gathering feedback from users on ongoing basis is the first step toward realizing this goal.

At Biogen, we develop digital solutions that aim to support a better patient experience and care journey — addressing areas of unmet need identified together with patients, caregivers and healthcare professionals and where technology offers us new avenues to fulfill those needs. We believe the digital health solutions or programs we work to build as a company will make a bigger impact the more the target group actually uses them. I sincerely believe that co-creation is the path toward more effective, impactful and personalized care.

We have ongoing efforts in this arena, including close collaboration among colleagues both internal and external, patient advocacy groups, medical professionals, users and their families, caregivers and more to work toward a comprehensive co-creation process that is customized to the specific challenges we’re addressing. It's a humbling experience to unite all these perspectives in pursuit of a common objective. It's even more momentous to think about the long-term implications of patient-driven co-creation and the ripple effect it could have across the entire healthcare paradigm.

Together, we can redefine what being a "patient" really means.