Considering Caregiver Experiences

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Deep Thoughts Series

By Jack Cole

Over the past 20 years the healthcare industry as a whole has made tremendous strides in targeting the importance of delivering better customer and user experiences to patients. These enhancements have ranged from package design in the form of easier to open pill bottles, to more intuitive health and wellness apps, to a greater focus on one-on-one healthcare services ensuring patients feel seen and heard.

Despite these tremendous strides forward, there are still so many more opportunities to push experiences further encouraging better communication, care, and most importantly outcomes over a person’s entire lifespan. The spectrum of solutions to be addressed run wide with the beneficiaries of applied design thinking going beyond just those receiving direct care. In my experience, one particular and often overlooked stakeholder in the healthcare experience journey is the caregiver.

As a designer, I’ve had the pleasure to work on a wide array of healthcare and pharmaceutical projects for print, digital, and product packaging. In each case, the challenges we sought to address largely focused on better outcomes for patients and/or the healthcare teams that serve them. For good reason, problems like helping aggregate early electronic health record information on to digital platforms for healthcare professionals (HCPs) was vital in building more accurate and efficient processes in care. Moving forward over the years however, UX research and design teams have realized that merely addressing one painpoint without considering the entire ecosystem of care can equate to a failure in an experience.

In thinking about the projects and experiences I’ve worked on up to today, consideration of the caregiver in the form of their needs, challenges, and ability to aid in solving a larger challenge has been at times cast in the shadows. For whatever reason, this person or group of caring individuals were often times mentioned but not always given the credit or attention they deserve as a potential key in achieving the desired business or care goal defined. Whether it be in helping spot signs of a particular malady in early diagnosis or making sense of the decisions to be made in immediate or ongoing care, the caregiver is an integral part of the equation.

From a project goal/business opportunity standpoint, even if the caregiver isn’t identified as the key role in helping drive success, a case can be made that their involvement could be the deciding factor. With this in mind, I thought I’d identify past projects that I was involved with which called for greater design considerations being made related to a caregiver’s role in a given experience.

Awareness Leading to Activation

When caregivers actually are considered, campaigns dedicated to shedding light on a particular disease or health issue is where design journeys tend to start. Marketing and design teams go to great lengths garnering attention to topics like Alzheimer’s Disease where caregivers are seeing the early signs. Call to action campaigns for caregivers to look for clues and go to a website for more information merely scratch the surface. Going beyond this standard call to action though, there can be opportunities to do more than just build awareness. In considering the role of the caregiver, we can help activate them sooner in being better advocates for their loved one’s health from the earliest stages of a patient journey.

One engagement that I was involved with early in my career was around building an information destination in identifying and understanding health issues. Working with a leading pharmaceutical company’s vast library of health content, the initiative was to translate their current-day health and disease research into a destination for consumers ranging from oncology to prenatal care.

This consumer-based site design project was running parallel to another project in development was a similar site exclusively geared for HCPs. Capitalizing on shared resources, the consumer site was leveraging similar health content. However, there was less focus around what an ideal content strategy could or should be for a distinct audience with different objectives than what an HCP would seek. Instead of building a robust strategy on how to curate and organize health information geared mostly to wives and mothers of families, the focus was instead on visual branding instead of on how or what to do with health information that could impact their lives.

Besides building a select few custom tools for specific disease-types, the consumer-focused site was a far lesser offering than that of its professional counterpart. While this project was in the early days of full on user research, the opportunity to build better caregiver engagement and understanding was lost. The biggest opportunity could have been for HCPs and caregivers to share a common communication platform building from a shared set of knowledge aligning on the best possible patient care.

The Three-Legged Stool Care Strategy

Like any relationship that lasts both over time and tough challenges, solid lines of open communication are invariably the secret ingredient to how it can endure. In the case of healthcare, I’ve heard the perspective from stakeholders in in-depth interviews that the bond between patients and doctors are paramount in meeting better care. From the lens of a holistic approach however, direct care and information transfer requires a wider scope of participants to ensure consistency and proper treatment.

Having the voice of the caregiver could be influential in helping identify what truly is happening to a patient between visits while also providing insight into the mindset of where that particular patient is at the time. Coupling this qualitative perspective in conjunction with the quantitative data gathered from a patient’s team of doctors and nurses can only help bolster a more tailored plan of treatment no matter the ailment or disease prognosis.

This fact was never more clear to me than in my recent experience working a digital medicine product for mental health. This project was and continues to be a multi-year commitment to not only aiding in the measurement of medical adherence in patients, but also helping form better conduits of communication for all involved.

While the primary focus from an FDA perspective was around introducing a new digital solution for those suffering from schizophrenia, bipolar disorder, and major depressive disorder, it was recognized early that any offering would need to hinge heavily on a thorough experiential strategy. This strategy would be paramount in not only aiding a patient and their care team in understanding a totally new system for administering and measuring medication intake, but also helping support adoption over time.

To this end, our team of UX researchers and designers had to set out in understanding the current landscape and overall openness to prescribing and using such an innovative new approach to medicine. We sought out on our discovery efforts first talking to HCPs about what issues they faced and what aversions they may or may not have had in trying a digital medicine system. Similarly, we also had opportunities to speak with both patients and caregivers to have a better understanding of their unique struggles and challenges that they face on a daily basis.

As a result of diving deep into the lives of patients, HCPs, as well as caregivers not to mention the disease landscape, our research revealed and confirmed:

That no two patients are alike

That HCPs need trusted help to help patients

That caregivers are exhausted, overwhelmed and most importantly have insights that no other stakeholder has

With this in mind, our experience strategy and design approach hinged around mapping each persona’s experiences, emotions, pain points and gain points. The result of the discovery and strategy work was a fully-considered experience tailored to each user that delivered accurate data as well as highlighting information pertinent to the persona in a form factor that made sense.

While the primary focus would always be in measuring patient adherence data and allowing for easy access for HCPs within their systems, a key experiential factor that our team identified was that patient adoption and ongoing use of a digital medicine system required the understanding and buy-in of caregivers in a large percentage of use cases.

Reframing Challenges for Better Outcomes

In the examples highlighted of just my own past experiences, I can cite examples of how opportunities were either missed or capitalized upon based on applying better approaches and seeing with a wider lens. Moreso in the healthcare and pharmaceutical industry than in any other, there is no such thing as a black and white set of answers. The design challenges UX teams face continue to be more complex with follow through and execution being paramount and outcomes potentially transformative.

As UX professionals working on health and wellness challenges, thoroughness of thought and approach requires us to ensure that we have quality insights and consider all facets of a challenge. Including caregivers in the equation even if they are not the primary focus could uncover the “What If?” insight that literally changes the game better health experiences impacting all involved.

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