Patient Engagement Is the Secret to Smarter Research—Here’s How to Nail It

For healthcare and life sciences entrepreneurs, translational research is often the bridge between a breakthrough in the lab and a product that changes lives. But that bridge is only as strong as the patient voice it includes. Too often, startups design promising technologies without understanding patient priorities, which means even strong innovations can miss the mark.

“It’s hard for me to imagine effective translational work without having patients involved,” said Eileen Anderson, EdD, Director of Education, Bioethics, and Medical Humanities at Case Western Reserve University’s School of Medicine. “We develop some amazing things in the biosciences and biotechnology, but we aren’t always understanding patient experience and patient needs. So, we’re sometimes solving problems patients don’t have—and not solving the ones they do.”

Establishing patient engagement can feel daunting, especially for early-stage healthcare and life sciences startups. With limited resources and ambitious timelines, many don’t know where to start. The key, Anderson said, is to start small, act intentionally, and focus on trust.

Here are practical suggestions from Anderson and Ralph Kern, MD, Chief Medical and Scientific Officer at Cognito Therapeutics, a company developing therapeutics for people with Alzheimer’s disease and other neurodegenerative conditions.

Host Focus Groups to Understand Lived Experience

Innovations can be technically brilliant yet fail if they don’t address what patients actually need. Hosting small focus groups or informal conversations gives you insight into daily pain points, treatment expectations, and what patients actually want solved.

Build a Small but Diverse Feedback Network You Can Count On

Forming a small group of key informants or community gatekeepers allows for ongoing, structured feedback. These people know the patient community, can translate real-world needs, and can help you reach participants you might not reach on your own.

Partner with Advocacy and Online Communities

Patient advocacy groups and online communities are invaluable for understanding what patients face every day. They also help you find people who are motivated to collaborate and give input—especially patients who are more comfortable engaging online.

Involve Patients in Identifying Study and Treatment Burdens

When patients are involved at the design stage, they can flag parts of a protocol that are intrusive, exhausting, too frequent, or unrealistic in the context of their lives. Fixing those upfront makes studies more respectful and improves recruitment and retention.

Simplify Screening and Enrollment

Use multiple outreach channels—social media, advocacy groups, clinician partners—to reach the right population. Offer flexible and accessible enrollment options, such as virtual onboarding or after-hours availability, to accommodate different schedules and tech comfort levels.

Make Your Inclusion Criteria Reflect Real Life

Inclusion and exclusion criteria should reflect the people actually living with the condition—not just those who already have access to high-quality care. Broadening access improves equity, strengthens the data, and helps ensure your solution applies to the widest group.

Choose Endpoints That Matter to Patients

Selecting endpoints that capture outcomes meaningful to patients—quality of life, function, burden—aligns your research with what patients care about. Kern said to always put yourself in the place of the patient and care partner and ask what feels safe, convenient, and worth it.

Align Patient Compensation With the Value of Their Contribution

If you’re asking patients to give time, energy, or health information, compensate them fairly. Consider time, invasiveness, travel, and health risks. In some cases, access to care, transportation, or specialist expertise can also be an ethical form of support.

Close the Loop with Feedback

Don’t just collect patient input—tell them how you used it. Showing patients how their feedback influenced the study design, endpoints, or product direction builds trust and long-term buy-in and makes people more willing to participate again.

Tips for Navigating Ethics and Conflicting Goals

When partnering with patients, use clear, simple language and be transparent about goals, expectations, and data use. Anderson and Kern emphasize that patient engagement should protect autonomy, reduce burden, and make participation feel safe and worthwhile. To do that:

• Establish clear guidelines for informed consent.

• Respect patient autonomy and the right to opt out.

• Recognize that time-consuming or travel-heavy studies can increase dropout rates.

• Honor the relationship between patient and provider.

• Make engagement diverse and accessible.

• Clarify how patient data will be used and shared.

• Be transparent about the limits of patient influence so expectations are realistic.

• Collect feedback throughout the process and adjust as needed.

• Give patients a way to voice concerns.

• Communicate clearly and consistently.