A version of this article was previously published in the Journal of mHealth.
Direct pharma-patient engagement used to be considered largely a “nice to have,” and was, at best, a rare occurrence at specific times during the pharmaceutical product life cycle. Now, this viewpoint is rapidly becoming outdated; patient engagement is becoming a regulatory requirement and more companies are realizing the benefits of engaging patients early and often. However, for many Pharma teams, engaging patients is still a new concept, and getting started can feel daunting.
In this article, we’re diving into the “5 W’s” of patient engagement and share how virtual collaboration tools can be used to facilitate ongoing relationship-building and insight-gathering.
Getting started with patient engagement can seem scary if you are used to engaging only with healthcare providers (HCPs). Although there are unique considerations to interacting with this stakeholder group, many of the same best practices apply. Especially, engaging a diverse group of individuals (whether patients, patient advocate leaders, or caregivers) from different geographic locations, cultures, races, ethnicities, genders, and ages is key to gathering representative insights. To facilitate this, highly customizable virtual activities are preferred to allow everyone to participate and give input equally, irrespective of differences in language, tech-savviness, or education levels.
Pharma must proactively plan to include the patient voice at all stages of the product life cycle. As a general rule, at every step where you would normally engage HCP advisors for feedback, engage directly with patients in parallel, starting as early as possible (i.e., pre-clinical or early-stage clinical trial stage) to maximize the benefits.
Examples include working with patients and/or patient advocacy groups to understand unmet needs, get feedback on or co-create clinical trial protocols, review clinical trial or real-world study results to co-develop plain language summaries or other educational resources, gather insights into product messaging or awareness campaigns, optimize patient support programs (PSPs), create patient journey maps, and much more.
However, it is important to note that there is (and should be) no one-size-fits-all approach to patient-centricity, only best practices. For that reason, the engagement plan needs to be customizable and flexible.
All that said, patient advisors typically have even less ability to travel than HCPs; they not only have work and family commitments but may also be spending a lot of time in hospitals or clinics for treatment or clinical trials. With their convenience in mind, a fully virtual approach is usually preferred, using a mix of asynchronous (over-time, anytime) and synchronous (real-time) tools.
The best timing of patient engagement is an important question and something that many Pharma teams are learning as they go along. Based on experience and the outcomes we are seeing from our clients’ patient engagement programs, the earlier you can start to involve patients, the better. However, that doesn’t mean that you shouldn’t do it if you are already at the commercialization or loss of exclusivity stage. As the saying goes, “The best time to start was yesterday, the next best time is now.”
Rather than focusing on how early or late to engage patients, focus on how to ensure ongoing and authentic engagement. By longitudinally engaging patients, you get a steady stream of insights and build strong Pharma-patient relationships in the process.
With potential differences in time zones and schedules among patient participants, a virtual format, especially if participants can contribute asynchronously (i.e., on their own time, over time), is advantageous. Virtual patient engagements offer superior flexibility and increase the likelihood that they will be able and interested in participating. Rather than having to take time off work or away from their families, using this approach, patients can engage with Pharma from the comfort of their home, office, favorite coffee shop, or while in transit, at the time(s) most convenient for them.
There are of course times when in-person meetings may make sense, such as for small, regional advisory groups. However, even for these types of events, making the meeting hybrid and offering participants the choice to attend virtually will result in higher engagement rates and participant satisfaction (not to mention lower environmental footprint and costs!).
While Pharma is used to getting feedback from HCPs on what they have heard or what they think their patients are experiencing and feeling, this does not provide the full picture.
In addition, in a recent survey, only 44% of patients stated that their needs are being met by pharmaceutical companies; the largest gaps identified were related to engaging directly with patients. Within the pharmaceutical industry, over 90% of people consider patient-centricity highly important. However, only 20% of patients are reportedly aware of the support services pharmaceutical companies offer, and many have voiced frustration with the industry’s patient engagement practices, including the fact that when they are engaged, it is typically too late in the product life cycle and there is no effort to build long-term, sustained Pharma-patient advocate relationships. Many other surveys have revealed similar findings, indicating a clear gap between where the industry currently is and where it should be.
Virtually engaging patients offers a multitude of benefits and can help overcome all of the barriers associated with traditional patient engagement. As mentioned, the virtual format allows more diverse patients to sit on patient panels, steering committees, or advisory boards, resulting in more representative insights. It can also help overcome accessibility issues through features such as asynchronous collaboration tools, speech-to-text, automatic translation, subtitles, and expert interpretation, including various sign languages.
Using clinical trials as an example, getting early feedback from diverse stakeholders, or (even better) involving them directly in co-developing the study protocol, can help improve recruitment and retention of patients from underrepresented communities, theoretically leading to more representative trial results. Similarly, early patient feedback on promotional or educational materials can help ensure that they are understandable, inclusive, and valuable to patients.
The key question: How?
With patient involvement quickly becoming a must-have, life science teams need to proactively plan to incorporate the patient voice at all stages of the product life cycle. However, coordinating with multiple groups of stakeholders, especially patients, caregivers, and advocacy groups, can be complex and overwhelming at times.
Working with an experienced in-between strategic liaison to help build relationships with patient advocates, facilitate the coordination of patient advisors, and enhance accessibility to engagement opportunities is a good start. By leveraging a compliant and comprehensive virtual platform for all cross-functional patient engagement and insight-gathering programs, customized engagements can be designed while behind-the-scenes operations are streamlined.
There are countless different ways to engage patients and patient advocates. In order to be truly patient-centric, the patients’ preferred engagement location, frequency, and type (i.e., asynchronous virtual touchpoints vs. synchronous web meetings vs. hybrid meetings) should be considered. As examples, patients can be engaged asynchronously to co-create patient questionnaires for the larger patient community using virtual discussion, annotation, drag-and-drop, rating, ranking, and mapping tools. Using the same toolkit, virtual patient panels can be assembled to co-develop strategies for sharing clinical trial results with other patients, reviewing communications plans, optimizing PSPs, creating patient journey maps, and more.
No matter the type of program, ongoing, systematic insight-gathering on the patients’ needs, wants, and experiences is key to ensuring true patient-centricity.