Making patient surveys count

Aug 1, 2019
Making patient surveys count

Successful advocacy relies on a thorough understanding of the needs of the people you serve – making surveys an essential tool in the armory of any group.

But how do you make the most of the time people so generously give to take part?

Chuck Strand, CEO at prostate cancer patient advocacy group Us TOO, offers his hints and tips on designing and conducting patient surveys.

Every voice matters

Every voice matters and it is important for groups like ours to truly represent the needs of the patient community.

As advocacy organizations, we have the opportunity to speak with people one-on-one, but we also need to overlay those qualitative conversations with quantitative data collected from surveys. Having this data is invaluable because it gives us a much broader overview of what people are thinking and how we can better serve their needs.

We cannot truly represent the patient voice or be recognized as doing so if we don’t understand what the community is interested in, what’s going well, and what issues they are facing.

Communicate the objective

Patients and caregivers tend to be very generous with their time and are usually happy to share their experience if they trust the source of the survey and know that their feedback is going to help others. That’s why it’s critical to communicate the objective of the survey at the outset.

Start off with a short introduction to explain why their participation is being sought, what will happen with the data,  the value of taking part, and an estimate of the time required to complete the survey. Patients are barraged with requests for their personal information and perspectives from multiple registries and surveys, so we need to be respectful of their time.

Many patients and caregivers want to share their experience if it can help others. We often hear the analogy of making lemonade out of lemons. Whether it’s sharing advice in terms of what’s going well or what needs improvement, patients and caregivers who participate in surveys often do so to generate something positive from the challenges they’ve had to face.

Designing a survey

When developing a survey, always think “what will we do with this information?”

It’s easy to pose questions – but think ahead. How will you apply that information to better serve the needs of your patient community? Surveys need to gather information that will drive things forward and help achieve better outcomes.

It’s also important for the survey to be as concise as possible. Again, it’s about being respectful of patients and their time.  Ask questions that are going to be as targeted and specific to drill down into the details and drive the agenda forward.

Targeting the right audience

Think about whose opinions you need to canvass. We want to ensure we only collect responses from relevant segments of the population.

Sometimes, for example, we will only survey our prostate cancer support group leaders. Other times, we will send the survey to our entire database.

It’s important to cut to the chase with a qualifying question as early as possible in the survey to ensure people who are interested in participating also fit the profile of eligibility. If someone does not match the survey profile, we thank them and respectfully explain why they are not a match.

Analyzing the results

You don’t always get the answers you expect, but you need to listen to what is being said. For example, a recent Us TOO survey identified the need to recognize the potential emotional and psychological impact of prostate cancer on men and their loved ones who are battling the disease. We developed educational content and support services to help address and manage these issues; and we continue to build on the conversations and feedback we receive on this topic.

Understandably, there was also a lot of interest in the latest treatments, therapies, medical devices and clinical trials. This information is the source of real hope for advancements in prostate cancer in the pursuit of a cure.

Make it count

Once you have the information you asked for, use survey results to drive the delivery of content and resources patients need.  As much as possible, use metrics to measure how well you are doing, be open to the potential need to redirect your efforts, and make sure you’re on track for delivering real value to your patient community.


Making patient surveys count


As CEO of Us TOO International, Chuck leads initiatives to provide educational resources, support services and personal connections to the prostate cancer community at no charge. In response to unmet or underserved needs of patients, caregivers, and support group leaders, recent content developed includes Us TOO educational events, webcasts, topic-specific web pages, and expanded support services. He leverages his marketing agency experience in rare disease/disorder therapies and pro bono nonprofit work to repurpose FDA-approved drugs as off-label treatments. He also brings experience in consumer relationship marketing through agency account management with Edelman Worldwide and Frankel/Publicis for clients including Apple, Kraft Foods, General Motors and Bayer Healthcare. Chuck began his work with Us TOO International as a volunteer in 2010.

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