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Background:

Our client was conducting an OLE study on the disease-modifying benefits of its investigational medication on patients with a rare syndrome. At the time, no existing therapy addressed the underlying mechanism of the disease.

The challenge: Understanding patient needs regarding the investigational medication and how to best bring those needs to the attention of the medical community.

To get a better understanding of the patient experience, the client sought to learn:

  • Patients’ health histories
  • Impact of the disease on patients’ lives
  • Impact of the investigational medicine on patients’ lives
  • What patient support was still needed

Clinical SCORE Approach:

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We worked with the clinical sites to help recruit clinical trial patients taking the investigational medication.

We conducted a series of web-enabled telephone interviews (TDIs) with each patient to understand different phases of their health histories.

This qualitative research included questions about the patients’ history with the disease, how they dealt with it, and their experiences with the investigational medication.

Clinical SCORE’s social scientists analyzed the recorded interview data to reveal patients’ psychological relationship with the disease and their needs for support programs and services.

Analysis:

Clinical SCORE’s research identified three major attributes to the patient journey:

1. Because they had so many mis-diagnoses before reaching the correct one, patients were jaded and minimized their diagnosis—deeming it unimportant and only revealing it to their HCP when prompted.

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2. Patients were hesitant to reveal important impacts of their disease and did not want to admit a need for patient support programs until encouraged.

3. Greater education was needed to help patients “own” the significance of their disease-related problems, which would in turn help them become patient advocates.  However, that education needed to come from HCPs who were themselves lacking in disease knowledge.

Results:

Table 4
  • Clinical SCORE helped the client build psychographic profiles of patients with this rare disease to assist in HCP education
  • We worked with our client’s HEOR to publish posters aimed at increasing disease awareness among patients and HCPs
  • Based on our research, we recommended patient support program concepts, including the creation of a social network that connects disease-sufferers together in order to provide emotional support and to decrease stigma and feelings of isolation
Clinical SCORE helps you convert unknowns to “knowns”, BEFORE launch.