Ensuring a patient centric approach during clinical research is vitally important to research sponsors and their partners. A clinical research site that fails to keep the patient voice at the forefront of their study can set research back and delay valuable product development for years. Clinical trial sites need to develop best-in-class, targeted patient services tailored to specific patient needs.
Many clinical research organizations set the goal of putting patients first, but find the achievement elusive. Patient-centricity is a measurable goal that is a prerequisite for organizations aiming to make clinical trials more accessible and convenient for study participants. Consider the following steps to create a meaningful patient centricity initiative.
Let Data Drive Patient Centricity
The key to implementing a successful patient centric strategy is a data-driven decision process designed to enrich the patient journey during clinical trials. Ensure your patient engagement team is constantly assessing, improving, monitoring, and reporting on the end-to-end patient experience. The first step is analyzing the patient journey by communicating directly with trial participants.
Create a Useful Dashboard
Gather a cross departmental team of key internal and external stakeholders and conduct a SWOT (strengths, weaknesses, opportunities, and threats) analysis. Assign a team to assess, improve, monitor and report on the end-to-end patient experience in a consistent way across the many touch points between patients and your site’s clinical trials. The dashboard can be used to assess patients’ experiences from when they first become interested, to when they are screened and scheduled, when they are randomized, and, finally, when patients complete the study.
Use your dashboard to create subcategories for each of the patient touch points mentioned above. For example, from the way a patient was medically screened for the study, to the consenting process, to the way they are treated at the clinic, all of which influence the patient experience.
Survey Your Patients Repeatedly
Conduct multiple surveys, including following the first patient visit, mid-study visit, study completion, and initial trial phone screening. Your team may be surprised how much room there is for improvement in even the most basic interactions, such as responses to patient calls and messages.
Track Problems & Respond Quickly
Establish a customer support team that tracks issues and concerns from patients in real time through the patient dashboard. We established a customer support team that manned the phone line and tracked issues and concerns from patients in real time on our dashboard. The feedback ranged from transportation to the clinics, trial compensation, and communication with staff, as well as electronic diary and compliance issues. Our tracker also informed us what clinical trial site and how often that issue occurred at that location in order for us to identify trends and monitor risks.
The second part of our dashboard used survey data to gather feedback through different points of the patient journey. We did a combination of automated surveys and spot individual interviews. This allowed us to have unfiltered contact with patients that were enrolled or considering enrolling. Their insights helped us shift the culture within the organization across multiple departments. With clinical trials becoming more challenging to recruit for, we wanted to make sure we did our part in measuring progress through data to continuously improve processes. A mixture of qualitative and quantitative data helped change perspectives around the need for a more patient-centric culture.
Create A Patient Advocate Program
Create a specialized Patient Advocate training program and set up dedicated resources at each study site to help enrich the patient experience. We created scorecards for each site that measured things such as Google reviews, issues noted on the dashboard tracker, focus group data, and survey data. The data allowed us to develop strategies for each issue through open dialogue in a shared decision making approach.
Our Patient Engagement team acts as independent auditors and mentors for the company ensuring that there is a team focused solely on the quality of the patient experience—very similar to how the Quality Assurance team helps safeguard data quality. The dashboard allowed us to proactively plan for patient engagement because the idea was to change internal behaviors to accept that patient engagement was a company standard and expectation.
Making Patients Part of the Clinical Process
A more patient-centric approach to clinical research allows organizations to identify common trends and unique situations that impact the way participants perceive research and medicine in general. Changing organizational culture to be more patient-centric requires reliable metrics and Key Performance Indicators (KPIs).
Using the statistics obtained from patients across trial sites, organizations can allow study participants to play an active role in customer service and clinical decision-making within the research network. This provides nothing less than the best possible association of the patient’s clinical research experience with the pivotal goal of aiding in discrediting the negative stigma associated with the clinical research industry in the public eye.
Hera Arham, MBA, is Director of Marketing & Patient Engagement with DM Clinical Research, a national network of clinical trial sites headquartered in Houston, Texas with sites in Chicago, Detroit, Philadelphia, and Boston, scheduled to open in January. DM Clinical Research earned the Society for Clinical Research Sites (SCRS) 2022 Excellence in Patient Centricity Award.
