How to Improve Clinical Trials by Empowering the Patient to Share their RWD and Patient-Contributed Data

In the rapidly evolving world of clinical trial technology, Debi Willis, CEO of MyPatientLink, is leading the charge in transforming clinical trials. Her innovative platforms, including MyResearchLink and MyLinks, are designed to enhance patient engagement and streamline data collection for clinical studies. In this interview, Willis shares her insights on how these technologies are revolutionizing patient recruitment, retention, and data accuracy in clinical trials while also addressing ethical considerations and the future of patient data management.

Moe: How can platforms like MyResearchLink enhance trial patient recruitment and retention?

their research team during their clinical trial journey. This approach not only broadens the pool of potential participants by making trials more accessible to all, but also fosters a sense of ownership and involvement among patients, which is crucial for maintaining their commitment throughout the study. By empowering patients with the tools to manage their participation, we create a more inclusive and efficient recruitment process.

Moe: How can customizable online forms improve data accuracy and completeness in trial data collection?

Customizable forms allow the collection of specific patient information not typically found in EHRs, such as travel history or environmental factors. This also provides an opportunity for collection of patient-reported outcomes, quality of life questionnaires, adverse events, and any other set of questions during a clinical trial that would help the study team better understand the impact of the intervention on the patient’s life. This ensures that doctors and researchers have comprehensive data, reducing the time spent on data entry and increasing the accuracy of the information collected. By enabling patients to provide detailed and relevant information electronically, we minimize the risk of errors and omissions during manual data entry, thus enhancing the reliability of the data used in clinical trials. This approach streamlines the data collection process and empowers patients to actively participate in their healthcare journey, leading to more accurate and meaningful insights for researchers.

Moe: What ethical considerations are in using patient data collected through platforms like PatientLink for secondary research?

We are very strict about patient consent. Data is only shared if the patient consents, and they have control over what data is shared, with whom, and for how long. This approach respects patient autonomy and ensures ethical use of their data. In an age where data privacy is paramount, our commitment to transparency and patient empowerment is not just a legal obligation but a moral one, ensuring that patients remain at the center of the decision-making process regarding their personal health information. By prioritizing patient consent and control, we build trust and foster a collaborative environment where patients feel confident sharing their data for research purposes.

Moe: How can implementing patient engagement solutions impact the efficiency and outcomes of clinical trials?

Automating data transfer from EHRs to research systems eliminates manual data entry errors and reduces costs. This speeds up data availability and enhances patient safety through better surveillance. Faster, more accurate data fosters trust with patients, improving trial retention and outcomes. For instance, if a lab result indicates a potential issue, our system can alert the study team immediately, allowing prompt intervention and reinforcing the patient’s confidence in the trial’s oversight and care. This proactive approach improves the efficiency of clinical trials and ensures that patients receive the highest level of care and attention, ultimately leading to more successful and impactful research outcomes.

Moe: Is there anything else you would like to add about the future of patient data management in clinical trials?

Patients will soon be the curators of their data, deciding who to share it with. This shift is akin to the digital transformation seen in other industries. Research sponsors must recognize this trend and engage with technologies like ours to stay ahead. Our mission is to save lives by accelerating the discovery of cures, and patient-driven data management is key to achieving this. As a cancer survivor, I am personally invested in this mission. Empowering patients with control over their data will lead to more personalized and effective healthcare solutions. By embracing this future, we can create a more patient-centric research environment that advances scientific discovery and improves patients’ quality of life worldwide.