Why Patient Experience Insights Matter in 2023

In the world of healthcare and medical research, there's a quiet revolution happening, one that's not just about advances in technology or groundbreaking treatments but about putting patients at the center of it all.?

We’re talking about patient experience insights.

Traditionally, patients were seen as passive subjects, contributing data under the supervision of healthcare professionals or researchers. However, the significance of patient experience data - and the insights we can derive from it - has grown exponentially in recent years.

Patients, sometimes called "spetspatients" (or lead patients), are now actively partnering with pharmaceutical companies and researchers to capture their valuable experiences. This collaborative approach is transforming the landscape of medical research.?

Patients are no longer viewed solely as the recipients of care but as key opinion leaders who can help identify and solve critical healthcare challenges.

Co-authoring research papers with patients has emerged as one of the most powerful ways to capture patient experience data. When patients become co-authors, they offer a unique perspective that can shape research outcomes. This approach is valuable for the patient community, regulatory submissions, and health technology assessment. The approach ensures that research aligns with patients' real needs and preferences, making treatments more effective and efficient.

Patient experience data serves as the foundation for generating authentic insights and steering progress in healthcare. These insights, distinct from raw data, carry a profound impact. Regulators increasingly recognize the importance of patient experience data in real-world evidence, highlighting the critical link between data quality and the success of regulatory submissions.

However, the challenge lies in gathering robust datasets consistently. While patients generate rich real-world evidence, sorting, categorizing, and synthesizing this data is complex and requires standardized methodologies. Initiatives like the FDA's Patient-Focused Drug Development Guidelines and the National Health Council's Patient Experience Mapping Toolbox aim to provide guidance in this area.

As we look ahead, it's clear that patient experience data is more than just a nice-to-have dataset. It's a game-changer in healthcare research. Companies must develop capabilities to capture the patient voice systematically.?

Here are some anecdotes from actual patients who have participated in research with Thrivable:

• Ginny, living with type 1 diabetes for 57 years, found value in participating in studies. She emphasized the importance of patient input and how surveys and studies can help individuals express their feelings.
• Janis, diagnosed with type 1 diabetes 68 years ago, highlighted the need for medical device companies to understand diabetics' needs. She stressed that sharing her voice through Thrivable helps bridge this gap.
• Esther, living with type 1 diabetes for almost 20 years, realized that accepting her condition was essential. She joined Thrivable to give herself a voice and help communicate the needs of long-term diabetics to relevant companies.
• Jeff, diagnosed with type 1 diabetes in 1967, appreciated the positive experience of participating in Thrivable surveys. He emphasized the importance of sharing thoughts and opinions to advance diabetes research.

The patient experience insights revolution is underway, shaping the future of healthcare research. Patients are no longer just data points but active contributors who can drive innovation and better outcomes. So, whether you're a patient or a healthcare professional, remember that your voice matters and your experiences can change lives.

Let's continue this dialogue, share our stories, and work together to make healthcare more patient-centric in 2023 and beyond.

ABOUT THRIVABLE

Thrivable is a market research and software company that helps businesses understand their customers and develop winning strategies. Dedicated to seeking insights that yield patient-centered solutions, Thrivable uncovers hidden truths and helps transform lives.