Patient Experience Data is particularly important for the rare disease community because of the inherent limitations in working with small populations, which can cause delays in approval processes. Accessing life-saving or life-prolonging therapy through unlicensed medicine programs is often the only choice. As a result, Patient Experience Data captured as part of Real-World-Evidence (RWE) can be a valuable and robust tool for regulators, payors, and clinicians during the approval phase of a drug and in markets where the drug may never be approved. In fact, by capturing the patient’s experience and insights, a more holistic evaluation of care can be understood. Something as simple as patients reporting that they feel “burnt-out” can be a valuable insight.
These data are often captured as ad hoc snapshots of daily experiences collated by both formal and informal processes. Take Maria, a mother of a daughter with Prader-Willi Syndrome. Maria has seen the value of capturing daily insights firsthand. Initially, she connected with other caregivers through social media and found that parents modified their children’s diets as a means of managing their disease. This discovery was done independent of any formal clinical trial or study, and it was not until Maria was able to create a clinical trial with a doctor to prove its efficacy that it became viewed as a legitimate treatment. In this case, the Patient Experience Data from the caregivers’ daily lives was ignored and a viable treatment option was left unused. By neglecting Patient Experience Data, drug developers are missing key insights that can lead to better outcomes for both patients and developers.
The most significant barrier to collecting patient insights is bridging the gap between the communities and the medical field. Each rare disease condition is unique, and the data needs to be specific to that condition. The collection method needs to be accessible, user friendly, and provide a direct connection between the patient or caregiver and medical professionals. By investing in the collection method, ideally by co-creating the data sets, developers will be able to collect long term data at every step of treatment and gain a better understanding of what is important to the patient.
RareiTiCARE provides a customizable and user-friendly digital platform that seamlessly integrates all these needs. Patients have an easy-to-understand layout of their treatment, straightforward surveys and data entry screens, and access to medical practitioners on demand. Patients, caregivers, clinicians, and pharma companies all have access to the same data and charts that are generated by the information provided by the user. RareiTiCARE is designed to achieve better outcomes for patients, drug developers, and healthcare providers. Contact us today for a free demo and to find out why RareiTiCARE could be the solution you’ve been looking for.