Patient-Centered Research as a Bridge between IT and Better Health Care
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- Draft Key Questions: Systematic Review of the Impact of Doula Support During Pregnancy, Childbirth and Beyond (2024)
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Past Opportunities to Provide Input
- Patient-Centered Economic Outcomes Landscape (2023-2024)
- Systematic Review of Audio Care for the Management of Mental Health and Chronic Conditions (2023) -- Draft Key Questions
- Proposed New Methodology Standards for Usual Care as a Comparator (2023)
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
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- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
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Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
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Information Technology (IT) plays an increasingly prominent role in all aspects of society, and National Health IT Week, beginning September 15, offers an opportune time to reflect on how far this field has come in influencing health care. Patients, clinicians, and researchers can all benefit from increasingly sophisticated IT tools. Patient-centered research provides a bridge from health IT to improved care and care delivery.
In barely two decades, many healthcare systems and providers have shifted from paper to electronic medical records, enabling clinical information to flow among care settings and providing patients with welcome access to health indicators via secure web portals. Clinicians tap into electronic storehouses of evidence-based medical information and employ computerized decision-support tools. Researchers rely on IT to identify potential participants for clinical trials, uncover patterns in data collected, and use tablets or other electronic devices to collect data from patients
Mobile devices for consumers already track diet, exercise, and other activities that influence health. A growing number of websites provide information about medical problems and care. Other websites help patients who have a disease in common share their experiences, including treatment outcomes.
PCORI’s Health IT Focus
We at PCORI fully appreciate the enormous opportunities that health IT offers to advance our mission of supporting patient-centered comparative clinical effectiveness research (CER). So to mark National Health IT week, we’d like to showcase projects we support that take advantage of health IT, explore patient and caregivers attitudes toward—and use of—these technologies, and advance them.
PCORI’s greatest venture into health IT is the creation of PCORnet, the National Patient-Centered Clinical Research Network. PCORnet will provide researchers with a large resource of data gathered in clinics and other real-world settings. To foster observational and experimental CER, PCORnet data will be stored in standardized, interoperable formats under rigorous security protocols and shared across the network using methods that ensure confidentiality.
PCORnet is comprised of 29 health data networks, some that originate in healthcare systems and others operated by groups of patients. One patient-led network that is strongly leveraging IT is The Health eHeart Alliance. It employs a wide range of electronic technologies, including remote monitoring of blood pressure and heart rate; mobile apps; online portals; and a state-of-the-art data system. To reach its goal of collecting more data on heart health—from a larger population—than any previous study, the alliance is using social media to recruit participants and will enable them to share their own data as the study progresses.
Many Aspects of Health IT Research
Other PCORI-funded studies are exploring a wide variety of approaches to the use of IT in advancing health and health care:
- Researchers in New York are conducting a national, randomized study aimed at measuring the effectiveness of web-based videoconferencing to deliver specialty care to Parkinson's disease patients who would not otherwise have access to a neurologist.
- An Illinois team is comparing standard hospice care and care supplemented with a set of computerized tools to reduce end-of-life cancer pain. The tools include tablet computers on which patients or their caregivers report pain levels and receive multimedia information on pain management. Hospice nurses also receive the patient’s data and guidance in managing pain medication. All information collected is automatically stored in an electronic database, which generates further information for patients, caregivers, and nurses.
- A Florida team is comparing the impact of traditional informational booklets versus a personalized health information navigator, in which a tablet computer delivers information guided by patient preferences, to help men with prostate cancer choose among treatment options.
- Researchers working with the National Stroke Association are exploring the needs and attitudes of post-stroke patients and caregivers toward mobile technologies that support complex care management.
These projects and others that we support capitalize on the far-ranging capabilities of IT, as well as the close relationships many consumers have with their smartphones and other electronic devices. As our portfolio of studies grows, we expect health IT to play an increasingly important role. We’re excited by the prospect of contributing to the growing evidence base on how IT can optimize healthcare experience and strengthen patient-centered CER.
Greene is an Associate Director of PCORI’s CER Methods and Infrastructure program
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Comments
September 30, 2014, 7:40 PM
Comment by PCORI,
September 24, 2014, 5:56 PM
Comment by Linda Hageman, RN,
I am the Executive Director of a Rare Disease nonprofit for Multiple Endocrine Neoplasia. We received PCORI funding to build a Genetic Research program to study for Multiple Endocrine Neoplasia, which we partnered with Duke University to set up a Hippa Compliant source of information to study this genetic research. We were poised to resubmit another grant this past year, but unfortunately our Grant Writer missed the Letter of Intent for the funding cycle for this year. We are planning on resubmitting for a PCORI Grant in the March 13, 2015 schedule. We are in the meantime keeping in touch with PCORI web casts.
Thank-You for your time and consideration.
Linda Hageman, RN
We look forward to your future application.