Measuring the Impact of Patient Advocacy

How Wendy Erler of WAVE Life Sciences Defines Success

How Wendy Erler of WAVE Life Sciences Defines Success

Patient advocacy is a complex field that relies on stakeholder balance and representation. To adequately address the needs of differing communities, advocates must set goals, define success, and benchmark their own progress. Before the top advocacy meeting of 2017, we wanted to gain an insiders perspective of success in patient advocacy, and how to measure it. To do this, we turned to Wendy Erler. Erler, Vice President of Patient Advocacy and Market Insights at WAVE Life Sciences and key speaker at this year’s Strengthening Patient Advocacy Relations Conference, explained how she defines goals, measures success, and addresses challenges in patient advocacy.

Defining Advocacy Goals

Success in patient advocacy hinges largely on defining what success in advocacy may be. This differs between different advocates, but Erler provides a basic focus on the main goals of advocacy professionals. She explains, “There are both internal and external goals within an enterprise for advocates. Internally, you want to be known as the face and voice of the patient. Everyone should automatically know what you represent, and how that representation will help form everyday decisions.”

“Everyone understands success as something different, and so they will want to measure their success differently.”

This representation is crucial to maintaining a general focus on patient interest, access, and care quality within an enterprise. Externally, however, patient advocacy goals and success is through the community, rather than internal representation. Erler explained, “Externally, success can be seen through community support and knowledge surrounding WAVE. If patients and patient support groups are reaching out to WAVE because they understand us as a true partner organization, we know we’re doing our jobs.” Connecting with the community enables patient advocates to gain better insight to inform clinical development, promote disease education and clinical trial information,  and ultimately help patients get the information they need about possible therapies.

Measuring Success

When asked what the biggest challenge of measuring success in patient advocacy, Erler answered, “Just that. Everyone understands success as something different, and so they will want to measure their success differently.” The variations in success and how success can be measured means that, although there are main goals and basic understandings of “success,” there may not be basic understandings of measurement. One way Erler combats this in her role is through common measurement techniques.

She explained, “To add measurability, basic patient surveys detailing general knowledge and impressions of WAVE have been very helpful. Usually, these will tell us what we can improve upon, where our efforts are paying off, and where we can redistribute our focus.” Distributing these surveys throughout the timeline of a project, before, during, and after, show the arch of patient opinion, “From these we can see projections for the next year, and compare current answers to previous years. This really helps us plan outreach and improve our advocacy within the patient community.”

Likewise, measuring the extent of outreach is important in understanding how patients are engaging with your information. Social media has helped broaden reach to patients who might not otherwise be able to engage. Moreover, with social media, patients can provide meaningful feedback and input in real time.

Challenges in Advocacy

Erler’s biggest challenge in advocacy success is defining exactly what success is for a patient advocate. This may be an obstacle in reaching goals and furthering advocacy. To combat this, Erler suggests listening and learning from different stakeholders. She explains, “For example, in a previous advocacy role, I had the privilege to meet with ALS patients. At one point, I think we all assumed that the ability to breathe independently would be the most import part of therapy . When we actually sat down with patients and asked them what the most important aspect of their therapy is, the answer surprised us. They told us that the ability to hold their kids longer and help their families is the most important factor of treatment.” Listening and learning, for Erler, is the only way to know which goals you should be working towards, and thus, how successful they are in reaching those goals. Erler recommends transparency in everything a patient advocate does. Having frank and honest conversations with patients only helps further progress to specific goals, and ensures a continued, positive relationship with the patient community.

Understanding and measuring patient advocacy involves multiple stakeholder views and goals. Combining these views and increasing community outreach helps advocates to focus on, and closely define, progress in reaching these goals. Measuring success in patient advocacy may rely on many factors including patient opinion, ease of treatment, and tracking patient engagement. To learn more about patient advocacy success, and measuring the impact of advocacy, register for the Strengthening Patient Advocacy Relations Conference, July 25-26 in Baltimore, MD.

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