With increased uncertainty, confusion, and fear in the current environment, it’s our duty in healthcare to care for patients holistically. COVID-19 has changed social norms, altered everyday forms of interaction, and disrupted traditional healthcare delivery. But it has also stimulated transformation and innovation across the industry. This transformation has made an agile and empathic approach to understanding patients’ needs ever more vital. If the goal is to capture deep insight and a contextualized understanding of the patients’ lived experiences, then digital ethnography should be given serious consideration. After all, our responsibility as providers, marketers and researchers is to find ways to support patients in ways that stretch beyond clinical treatment and address the patient’s holistic needs.
Patient-focused drug development
There is a growing awareness in pharma that in order to provide a more holistic view of disease and well-being, there is a need for data that captures the patient perspective. As a result, patient input is increasingly recognized as an important element of drug development across the entire span of the product lifecycle. The patient perspective has always been sought after in the post-marketing phase, but it is now proving to be valuable in the early discovery phase as well as the clinical investigation phase of the drug development process.
The 21st Century Cures Act, passed into law in 2016, emphasizes the need for patient engagement and offers a compelling case for the value of patient insights in the drug development and review process. It intends to impact the kinds of evidence the pharmaceutical industry may use when undergoing drug approval. Through this legislation, novel medical products and therapies can receive FDA review and potential approval if the regulatory package contains evidence detailing the patient experience. It fundamentally aims to streamline the drug development process, facilitate patient access to needed treatments, and improve patient outcomes.
Observing and understanding the patient experience (in context)
For the Cures Act to achieve its intended purpose, the systematic collection of direct patient input is required. There are many different ways to collect patient experience data, but none that get us closer to the patient’s authentic experience than ethnography. Ethnographic research methods can provide a deeper and more contextualized understanding of the patient journey, which can support the success of a clinical trial and its related regulatory filing package. Moreover, they can add value to subsequent strategic considerations (such as medical education and commercial marketing) as the drug progresses in development. A closer look at the patient experience can help drug makers focus on what matters most to patients. It can also help them more confidently demonstrate drug safety and efficacy. This provides a holistic view of patient perspectives that can be added to the body of evidence needed for regulatory decision-making.
By engaging with patients in their lived environments, we can understand the context in which current and potential challenges and opportunities live. We can see how people live, cope with and manage their condition. We gain proximity to how they perform daily tasks, interact with others, their habits, and ultimately what roles different products and services play within their day to day environment. Also, how a person behaves in a particular context might differ from their behavior in other contexts. So, we need to contextualize that behavior in order to interpret that behavior correctly. Crucially, if we’re using ethnography, we can see what’s going on and better understand from an insider’s perspective what it’s like to be in that situation. We can observe the effects of the environment and what people have to go through at the specific moments when they are performing a particular task.
In academic anthropology, an ethnographic study can involve months or even years of observation. It is a lengthy and very involved approach, but applied anthropology in the context of patient experience research doesn’t need to be. We just need to get closer to patients and their lived reality to understand what they are experiencing and why. But how do we get close to patients in the context of COVID-19, where physical separation is the accepted norm?
Patient and stakeholder engagement must evolve
Within the context of the COVID-19 pandemic, we recognize that conventional approaches to patient and stakeholder engagement will be challenging. Like so many other organizations within and outside healthcare, LIFT has had to devise new ways of engaging with staff, the clients we serve, and the research participants we study. The tools and protocols of ethnography and design thinking can help strategic leaders in healthcare think through emerging challenges in a way that is grounded in empathy, centered on the human experience, and culturally relevant given the context of the ongoing pandemic and the rapid transition to virtual care.
Ethnographic methods are flexible and iterative
When it comes to applied anthropology, our methods are iterative. We design them to be responsive and flexible according to what is happening in the field. Research methods are never finished; they are always changing and developing across time. The whole point of anthropology, unlike other disciplines, is that we don’t expect to be formulaic in our methodology. Ethnographic methods are something you develop and adapt to different environments, communities, and circumstances—not necessarily something you prescribe. We would argue that the same will apply to the virtual or online environment.
The starting point is that an online engagement will be different for every population (and every individual) you might be working with. And you will have to come to an understanding of that specific form of engagement as you would have done in any offline (or in-person) ethnography. Just as there are many different offline contexts that you might be working with, there are a variety of online contexts as well, and the experience in each one will also be different.
Onward and upward
The pandemic and lockdown are tragic, and we face the very real prospect that we might not be able to get back into the field to do face-to-face observational research. We don’t know how long this situation will last, which feels debilitating in some ways. Still, even under these constraints, it is entirely possible to conduct research that is just as original, significant, and insightful as we might have originally envisioned. We just need the right tools to get it done.
We recognize that the way we engage with research participants will need to evolve in this new normal. As such, we have been encouraged to design creative ways of soliciting input from patients and other members of key stakeholder groups. We are referring to techniques that can help us achieve that sense of participation and belonging that we look to gain when we are there in person conducting fieldwork on site. These practices allow us to gain proximity to those worlds that key stakeholders occupy and are well suited to deliver rich, qualitative insight despite the current restrictions on in-person contact.
If you think we might be able to help, please feel free to contact us. We’re always happy to have a conversation.