Embracing Patient Ownership: The Time for Accepting Personal Health Data Ownership Is Now
The concept of patient data ownership is gaining traction amongst researchers this summer: it was discussed at DIA in Boston, and an article at Applied Clinical Trials on this topic was published in early June.
The article at Applied Clinical Trials discusses the potential benefits and barriers of returning clinical trial data to patient participants. Some reasons why pharmaceutical companies may be hesitant to return data include the time, resources, planning, and mindset required for implementation. However, returning data to patients is the right thing to do, with some pharmaceutical companies, like Pfizer and Janssen, actively considering patient data return programs. Improved patient recruitment and retention, especially among diverse populations, is cited as a potential benefit.
Christine Bahls’ article highlights that patient demands for data return have increased, and digital capabilities now make it feasible. However, there are hurdles to overcome, such as regulatory concerns and the need for tools and guidelines to facilitate the data return process. Patient advocates emphasize the importance of providing context and support alongside returned data to ensure its proper understanding and use. The potential for improving patient trust and engagement is seen as a driving force behind the push for data return. The article concludes that returning patient data can help build trust and make the industry more patient-centered.
Our team at Folia Health is encouraged by the traction gained in this space: we have pioneered this practice, by making study data available immediately for participant use since our very first study in 2019.
Harnessing the Power of Home Reported Outcomes (HROs):
Folia Health's revolutionary approach blurs the line between health data collected for research purposes and health data collected for individual use. The company's customizable platform, fueled by HROs, serves a dual purpose of improving individual health and augmenting existing research data. This means that the time patients and caregivers invest in tracking their own health outcomes can have a broader impact, benefiting multiple individuals without additional effort. By leveraging Folia Health's actionable health record, patients gain a unique opportunity to drive precise care and make informed decisions about their well-being.
Personalized Outcomes: Putting Patients at the Center:
Folia Health recognizes the importance of personalized outcomes that truly reflect the individual needs and experiences of patients. The company has developed advanced analytics that focus on both the n-of-1 (individual) and full population outcomes analysis. By allowing patients to identify and monitor the most relevant aspects of their disease experiences, Folia Health allows patients to be seen as the experts in assessing their own changes in health and therapy effectiveness. This patient-focused approach enhances the accuracy and relevance of the data collected, leading to more meaningful results in drug development and research studies.
Embracing Patient Ownership and Transparency:
At Folia Health, radical transparency, patient ownership, and good stewardship are fundamental principles. The company's commitment to these values is evident through our Data Dividends revenue sharing program. Folia Health ensures visibility into data usage and, for members who opt-in to research, actively shares the value generated from their contributions. By fostering a collaborative ecosystem and incentivizing patient involvement, Folia Health is driving positive change in the healthcare landscape.
As the trend towards true patient data ownership continues to grow, Folia Health stands at the forefront, revolutionizing the way patients and caregivers engage with their health data. By creating HROs, prioritizing personalized outcomes, and embracing transparency, Folia Health is bridging the gap between individual health management and valuable research insights, ultimately leading to more patient-centered outcomes in drug development and care provision.