The Case for Patient Communities in a Post-COVID World

patient community

Community – a group of people living in the same place or having a particular characteristic in common.

The notion of obtaining information from a group of people with some common characteristic is a foundational pillar of research – in market research, this can take the form of questions and surveys directed at an audience who behave in a particular way – such as purchasing a particular brand or being customers of a particular company. In the healthcare world, this takes on a slightly different slant – with one of the important audiences being patients who have experienced a particular disease or condition.

More often than not, this is a one-time thing. Researchers will reach out to a cross-sectional sample of individuals and obtain data from them with an eye to generalizing to a broader population. However, in certain arenas, researchers see value in longitudinal research designs – obtaining data from the same group of individuals at different points in time. This approach has been embraced by public health researchers among others, who are interested in the ability of longitudinal research to more accurately capture trends over time (both at the group and individual levels) and to identify cause-effect relationships.

Over the past two decades, market researchers have recognized the value in creating a longitudinal cohort of sorts – communities of individuals who are highly relevant to a brand or company (e.g., customers) – and who act as a source of deep insights. The opportunity to obtain multiple data points from individuals within the community is one advantage of this approach, but a more important motivation is the notion of agility – being able to reach out and quickly obtain insights that will help answer time-sensitive questions.

This approach can be an especially powerful tool in the healthcare space, where the ability to connect with and engage with patients can be challenging in the best of times, and even more so when the clock is ticking. These challenges become even more pronounced when dealing with smaller patient populations. As the pharmaceutical industry, in particular, has targeted the development of medications in oncology and rare diseases, the ability to find and convince these patients to participate in research has become even more challenging.

Why Create a Patient Community Now?

COVID-19 has impacted every corner of our society in profound and dramatic ways. This is especially true for patients who experience and live with chronic conditions. Not only are some with chronic conditions at greater risk for contracting COVID-19, but their ability to manage their health has changed and may be compromised by this crisis. A number of medical journals have documented the collateral damage caused by a reluctance to engage with the healthcare system. For example, the New England Journal of Medicine recently documented some of the life-and-death consequences encountered by patients with chronic conditions – specifically individuals with cardiovascular and other types of health issues not seeking treatment when they otherwise should have.

This is an extreme example, but there are many others in which patients with chronic conditions either delay seeing a physician or refilling a prescription or taking other steps to manage their condition. Recent Maru/Matchbox research supports this – data collected in April / May (2020) indicate that over 40% of all US adults are afraid to see their physician during the COVID-19 crisis. Digital health may help to address this – our research indicates that telehealth use has more than tripled since the onset of the COVID-19 crisis – but telehealth is limited in certain ways. For example, some conditions have treatment protocols that require the treatment to be administered in a medical setting. Macular degeneration is a perfect example – this condition can cause blindness and the current standard of care requires intravitreal injections, which need to be administered by a healthcare professional. These and other patients, who need to go see their physician in person but are afraid to do so, effectively weigh the tradeoff between giving into their fear and potentially compromising their health or seeing a healthcare professional in person, but putting themselves at higher risk for contracting COVID-19.

This is just one of many examples of the way in which the healthcare landscape is changing. A working assumption that some are making is that, once the situation with COVID-19 resolves, things will go back to a “new normal” that resembles to some degree the way things were before. I, along with many others, would argue that the new normal will be significantly different and the path to this new normal will take months if not years to attain and will continue to evolve and change over time. This will be especially true as we confront the implications of gradually removing social distancing / shelter-in-place restrictions.

Communities as a Flexible, Agile, Cost-Effective Tool for Understanding How Patients React to a New Normal

Now more than ever, life sciences companies need a mechanism in place for understanding how patients respond to this evolution. Furthermore, their information needs are multi-faceted. Understanding how events around COVID-19 are impacting patient behavior now and in the future. Understanding how long-held and deep-seated perceptions of physicians, treatments, companies, etc may be changing. Understanding how patient needs may be changing given the combination of COVID-19 impact and the accompanying economic downturn.

The question then becomes – how can they do this?

To effectively navigate the situation, companies need patient-driven research that is flexible, agile, and cost-effective. Building a community of patients all of whom have a common experience with a disease or condition is perhaps the best way of meeting all these goals.

Communities are flexible in that they can be approached in different ways depending on the business questions that need to be addressed. A quick assessment of patient reactions to announcements regarding another lockdown or the announcement of a new vaccine or treatment could be handled through a quick survey. Obtaining more granular feedback on sensitive communication may best be addressed through a qualitative engagement with a smaller group within the community.

Communities are agile from a research perspective in that patients can be engaged repeatedly, quickly, and on an as-needed basis. A patient community, established now, would enable a brand team or a company to understand the impact of COVID-19 on patients’ lives not just now, but at any point in the future. And as noted earlier in discussing longitudinal research – communities make it easier to capture multiple data points from the same group of individuals – which enhances our ability to identify cause-effect relationships. Another benefit of having a patient community on-hand is that it gives us the power to respond to and capture the impact of unexpected events in a timely manner. For example, if the President or a state’s governor declares a state of emergency again, we have the ability to quickly gauge patient reactions to the event and its anticipated impact on their lives.

Communities are also cost-effective in that costs associated with executing research are diminished, because there are no costs associated with finding patients and persuading them to participate. Additionally, the engagement can often be structured in such a way that patients receive non-monetary incentives such as providing them with meaningful information about their condition or giving them the ability to engage in meaningful ways with other community members. In doing this, costs related to incenting community members can be reduced.

Building and Maintaining a Patient Community

The process of building and maintaining a patient community requires an experienced, committed team. At Maru/Matchbox, we have a long history of building and maintaining communities, and the right combination of deep healthcare expertise, a secure, proprietary community platform, and an extensive research toolkit. These things, plus our focus on developing meaningful and flexible partnerships with life sciences companies, provide the foundation for a patient community that will be a valuable tool for moving a business forward in a world with an ever-changing COVID-19 landscape.

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