Look behind the lecture: do registry and real-world data have places in healthcare decision making?

In this feature, Rebekah Angove (Patient Advocate Foundation, VA, USA) discusses her presentation from the Patient Registries, Real-World Evidence and HEOR meeting (27—28 January 2020; Miami, FL, USA) on the relevance of registry and real-world data to healthcare decision making.

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Please could you introduce yourself and your organization?

I am a health services researcher, leader in patient engagement and the Vice President for Patient Experience and Program Evaluation at the Patient Advocate Foundation (PAF; VA, USA). I draw from my expertise in patient engagement to design and manage a comprehensive evaluation and patient experience program. I lead efforts to identify patient needs, translate those needs to direct service and policy recommendations, and evaluate the impact of these programs and services on patients and the patient community.

PAF is a national non-profit organization that provides direct support to individuals in the USA living with chronic, life-threatening and debilitating illnesses. Serving over 140,000 patients annually, PAF’s case management and financial programs are designed to provide a comprehensive and effective response to patients’ access and affordability needs.

Patients are experts in their own experiences, needs, and care goals.”

PAF also has a patient network that helps it further explore patients’ needs and experiences, as well as an extensive portfolio of patient education materials and health services research projects – all inspired and informed by the patient network and lessons learned while delivering interventions. PAF’s ultimate goal is to capture and amplify the patient voice to accelerate person-centered system and policy changes.

I am driven by a passion to advance the field and promote patient engagement in care, policy and research. I previously served as the Associate Director of Health Services Research and Engagement Director of REACHnet (LA, USA), a PCORnet (DC, USA) clinical data research network.


What may be some of the benefits of increased use of registry and real-world data in healthcare decision making?

Patients are experts in their own experiences, needs, and care goals. Data captured in clinical settings represent only a small piece of the health puzzle. Registries can help researchers and clinicians better understand patients’ perspectives, priorities, experiences, needs and goals. Real-world data can provide insight into what is happening in a patient’s life outside the clinical setting and help researchers and clinicians think outside the box when it comes to outcomes.


What is the importance of standardization with respect to use of registry and real-world data?

Standardization is essential for ensuring that registry and real-world data are useful and useable. It also promotes sharing of data across different sources, reducing the burden on a patient to answer multiple (and virtually identical) surveys for different groups. The field of patient registry data is becoming a competitive space, with multiple groups vying for a patient’s time and attention.

Standardization is essential for ensuring that registry and real-world data are useful and useable.”

This includes patient advocacy groups, disease-specific networks, research networks and healthcare systems. Any measures that facilitate collaboration between these key stakeholders will benefit patients, the science and, ultimately, healthcare delivery for patients.


How do you see the landscape of this field evolving in the future?

I think we need to continue to address the generalizability of the current data in registries, as well as the representativeness of the sources of these data. Bias continues to be a challenge, especially in registries, as many lack diverse patient populations with diverse races/ethnicities, income statuses, education levels, geographic locations and treatment experiences. I think that this underscores the need to collaborate and share data from multiple registries to increase the generalizability of conclusions drawn from these registry data.

Real-world data can provide insight into what is happening in a patient’s life outside the clinical setting and help researchers and clinicians think outside the box when it comes to outcomes.”

I also think that, going forward, there will continue to be increased focus placed on the importance of documenting and addressing the impact of social determinants of health on patient experiences and outcomes. Real-world data have the potential to collect reflect these social determinants of health in an efficient and creative way, to better integrate it into healthcare decision making.


Disclosure:
The opinions expressed in this feature are those of the interviewee/author and do not necessarily reflect the views of The Evidence Base® or Future Science Group.

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