Patient advisory groups: 6 things to think about before you ask your first question

Patient advisory groups can serve as a direct and unvarnished way of obtaining important information prospectively and retrospectively about your brand and the market. Who better to ask about treatment than those we ultimately strive to help. Patient advisory groups offer a tremendous learning opportunity, but they must be conducted with deliberation. In addition to learning from patients, it offers a unique chance to build relationships; establish, reinforce or correct impressions; and catalyze grassroots communication. Here are six things to keep in mind as you strategize your next session.

Small brush, not wide.

Even within the most underrecognized disease states, variability of patients can be broad. Age, gender, socioeconomics and disease severity are examples of what may influence how people perceive their health condition. When targeting participants for your advisory groups, keep this in mind. Juxtapose what you are trying to learn about with the likelihood that any of these factors could influence participation and potential responses. Sometimes conducting a series of groups comprised of patient segments can be more informative. Other times, however, there can be value in combining segments to obtain a variety of viewpoints. This judgment needs to be made with great sensitivity to those invited to participate.

It’s not about you.

Fight the temptation. It’s always easier to talk than listen. The goal, however, is to learn from your patients. Of course there is an opportunity to provide information, but don’t overdo it. Don’t overwhelm people with presentations and data. They’re with you to provide their insights and share their experience. Also remember whom you are talking to. Patients should not be treated like practitioners, or worse, investors. Keep your communication at the lay level and accessible.

The right ratio.

When hosting patients, it’s not uncommon for everyone at the company to want in. Everyone wants exposure and the chance to learn directly from the community we are trying to serve. It’s paramount, however, to keep corporate participation to a minimum. You can go deeper into conversation when advisory boards are limited to 8-10 people. But this limited presence obligates you to also limiting the number of corporate participants. The patients cannot feel outnumbered or intimidated. There should be many more of them than you. Furthermore, consider having a third-party moderator. This often enables patients to speak more freely and facilitates a professional, but warm dialogue. It can also help neutralize potentially challenging topic areas. Moderating is not the same as presenting. It’s important to select someone who can read the room, encourage participation, and improvise intelligently.

High engagement, low tech.

You want to foster participation among all of your patients. Each one has a story to tell. And you never know who will provide the gem insight of the meeting. One way of making patients feel more comfortable is to make the decision to go low tech. No PowerPoint presentations. No video cameras. No voice recorders. You don’t want your guests to feel as if they are lab subjects or being examined under a microscope. If you want notes from the meeting, appoint a scribe, but keep the feeling in the room comfortable and unintimidating.

An atmosphere of trust.

Even the type of room you select and the way you set it up matters. People need to be able to see and hear each other easily. The room should be right-sized to people feel a certain intimacy that is not forced. Corporate representatives and patients should not be positioned in a manner that suggests an us vs. them mentality. Round or u-shape tables or no tables at all can work well.

Hospitality matters.

These patients are your guests and should feel so. From the way they are invited, to welcome dinners and meals, to hotel accommodations and post-meeting follow-up, patients should be made to feel special and appreciated (while staying within the realm of legal and regulatory guidelines). Also recognize that this represents an opportunity for your patients to meet each other (in addition to them meeting you). Provide time for them to interact in a no-pressure environment without corporate representation.

Patient advisory groups are dynamic. They often run the full range of emotion as real lives are exposed and potentially challenging issues are faced. It is a privilege when patients electively share their stories and the breadth of their experience. This input can be invaluable as we seek to make a difference in the quality of their health.

by Jonathan D. Katz