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S.W. Young
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MS 27 - Engaging Patients in Research: Best Practices (ID 549)
- Event: WCLC 2017
- Type: Mini Symposium
- Track: Patient Advocacy
- Presentations: 1
- Moderators:S. Shilo, J. Kerr
- Coordinates: 10/18/2017, 14:30 - 16:15, Room 311 + 312
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MS 27.03 - Lung Cancer Registry: Using Patient Data to Improve Outcomes and Quality of Life (ID 7771)
14:30 - 16:15 | Presenting Author(s): S.W. Young
- Abstract
- Presentation
Abstract:
Background: Decision makers in research, industry, policy and health-care settings are actively seeking robust sources of patient data to inform their practices. Patient registries are ideally positioned to capitalize on this growing interest by building high-impact source of patient information. Registries give patients a direct means to participate in the care continuum, leveraging their input and insights to focus priorities and improve outcomes. Definition: Patient registries are organized systems designed to directly involve patients in the collection of their disease data and engage the medical community in the analysis and use of this data to improve lung cancer patient care. By creating a centralized registry of robust, on-going data to which patients, health-care professionals, researchers, industry, and policy makers have open access, registries provide data-driven, longitudinal information to: • support and facilitate improved disease management and standard of care; • assess individual patients to help determine the best line(s) of treatment; • measure patient outcomes to assess the quality and efficacy of health care provided; • use aggregate data as a tool to find patterns (for example, by ethnicity, geographic location, sex, age, stage of diagnosis, treatment protocols, health care facility/clinic, etc.) that could better predict the medical future and lead to improved outcomes and quality of life for patients, both individually and as a group, over time. • eventually allow us to evaluate the clinical and cost effectiveness of different diagnostic tools, treatments, and services. Current Landscape: Launched in 2012, The Registry of Patient Registries run by the Agency for Healthcare Research and Quality[1] currently list over 3,100 registries on its site covering a wide variety of registry types, but with most being research or institution generated. According to the National Institutes of Health, “Registries can be used to recruit patients for clinical trials to learn about a particular disease or condition; to develop therapeutics or to learn about population behavior patterns and their association with disease development; developing research hypotheses; or for improving and monitoring the quality of health care.”[2] In more recent times we have seen a rise in the development of Patient Powered Registries which “are somewhat indistinguishable from traditional registries, with one exception: In patient-powered patient registries, patients and family members “power” the registry by managing or controlling the collection of the data, the research agenda for the data, and/or the translation and dissemination of the research from the data.[3] Like researcher-generated patient registries, there is no single complete listing or documented number of PPRs in the United States however one study of 201 disease advocacy organizations found that forty-five percent had supported a research registry or biobank.[4] With the definition, purpose and current landscape being covered, we can now look at how registries continue to evolve both to meet the most common concerns and to greatly impact a patient’s care and quality of life. Multiple data sources: By leveraging the power of digital technology many patient registries now supplement patient reported data with clinical data through integration with Electronic Heath Record (EHR) systems. This integration allows for the capture of additional data points and to verify patient reported data, specifically when the patient may be unsure of the answer. In addition, natural language processing now provides the capability to “pull” information from uploaded documents and reports such as CT scans, lab reports, x-rays, genomic tests. Having multiple data sources allows researchers to paint a more detailed picture of the patients within the registry and more accurately identify patterns and eventually interventions. Clinical trial matching functionality: As with the integration of EHR, digital technology is now facilitating clinical trial matching functionality directly into patient registries. This service now allows patients, based on the information provided to not only receive a list of potential matches, but even allows for direct communication to the investigators involved in the study. Building patient communities: Unlike research or institution generated studies, patient powered registries may serve as a tool for building connected patient communities particularly when matched with general social media platforms such as Facebook and LinkedIn or more specific patient communities such as Patients Like Me and Inspire. Because patient registries now ask participants to consent not only to sharing their data, but to be contacted by the provider, registries can quickly bring together patients from across the globe for a variety of purposes, including driving research into their specific disease. This is particularly important in lung cancer which we now know is not one disease, but a series of “rare diseases” based on genetic differentiation. Educating patients: Being able to communicate directly with patients not only helps facilitate the building of communities and clinical trial matching, it also allows the registry provider to disseminate customized, personalized education materials directly to the participant. Multiple studies have shown how access to such information improves not only quality of life, but satisfaction with care. Conclusion: Well-designed patient registries are based on the idea that to improve outcomes and quality of life, no silos within the care community should exist, collaboration is critical, and there must be open and shared access to all information. In addition, today’s registries should leverage technology to allow for multiple data sources, longitudinal data collection, two-way communication and clinical trial matching to better serve its participants. By putting these tools to work and providing accurate, digestible information in the hands of industry, health IT companies, physicians and other health care practitioners, registries will organize and engage the entire lung cancer community around the common goal of better care for patients. 1. 4. Landy D, Brinich M, Colten M, et al. How disease advocacy organizations participate in clinical research: A survey of genetic organizations. Genetics in Medicine. 2012;14(2):223–8.
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