- 2023 Annual Meeting
- The PCORI Strategic Plan
- Clinical Effectiveness and Decision Science
- Dissemination and Implementation
- Evaluation and Analysis
- Healthcare Delivery and Disparities Research
- PCOR Infrastructure & Innovation
- Our Vision & Mission
- Financial Statements and Reports
- The PCORI Strategic Plan
- Board of Governors
- Methodology Committee
- Authorizing Law
- Evaluating Our Work
- PCORI's Advisory Panels
- Procurement Opportunities
Past Opportunities to Provide Input
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
- Proposed New PCORI Methodology Standards (2018)
- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
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)
- Past Opportunities to Provide Input
May is National Asthma Awareness Month—and a good time to highlight PCORI’s commitment to improving asthma care, with a particular focus on addressing racial and ethnic disparities in treatment outcomes. Overall, we’ve funded 14 projects centered on asthma. These include eight comparative clinical effectiveness research studies within our Addressing Disparities program that focus on improving outcomes and reducing disparities by increasing patient and clinician adherence to the National Asthma Education and Prevention Program guidelines. These eight projects are well under way with teams that include a wide range of stakeholders, including patients, clinicians, insurers, health systems, community clinics and practices, public health departments, and patient and caregiver advocacy organizations.
As the Addressing Disparities asthma projects embark on their second year, the research teams are incorporating input and perspectives from their diverse stakeholders to help ensure that their research findings will be useful to improve healthcare practices. The following examples highlight how patients, parents, clinicians, and others have provided important insight into the design and conduct of the projects.
Keeping Patients Engaged in the Study
A project based in Imperial County, California, along the US-Mexico border, is testing an intervention to help families, clinics, and communities promote asthma control. When the researchers first considered ways to keep patients participating in the study, they tended to focus on personal and economic barriers. However, young patients and their families reminded the researchers of the important role that the clinics play. The researchers have incorporated the suggestions into a revised Manual of Procedures and assigned specific tasks to clinic staff.
During an advisory meeting, for example, patients and their parents suggested that the clinic could be more effective in reminding patients to make appointments. When a patient calls to make an appointment for any reason, or a clinic clerk calls a patient with any appointment reminder, the clerk should check whether the patient is due for an asthma follow-up and, if so, ask whether that could be added to the requested visit.
In response to other suggestions from the patients and their parents, the clinics have begun one-on-one coaching of clinicians by asthma educators and medical assistants. These sessions emphasize the importance of answering patients’ questions and taking time to address their concerns.
Going Out to the Stakeholders
Another project, the Coordinated Healthcare Interventions for Childhood Asthma Gaps in Outcomes (CHICAGO) Plan, is evaluating interventions to promote asthma self-care and improved outcomes in 5- to 11-year-old children presenting to hospital emergency departments with uncontrolled asthma. To be sure to include the perspectives of clinicians, the research team spent time in emergency departments of six hospitals. To determine the viewpoints of family caregivers, the team visited homes of children with asthma living in Chicago’s south and west sides.
Caregivers gave the researchers a home tour, showing where they kept asthma medications and any instructions they had received during an emergency department visit. They explained the everyday challenges of managing their children’s asthma along with the demands of jobs and other daily medical issues.
One of the many insights that emerged is that the primary caregivers lack tools to coordinate with others who care for their child. Paperwork received during an emergency department visit is voluminous (sometimes as long as 10 pages) and overly complex. As a result, these documents are often discarded or stored out of reach and not shared with babysitters, daycare staff, or schools. As a result of the input from caregivers, the researchers designed new discharge documents for their study that use simple language and illustrations, so that important information is easy to understand and share. Instruction sheets are also well-organized to support conversations with others who care for the child, for example, with medications described on one side and home actions on the other.
Collaborating With Health Plans and Clinic Networks
Another project, in Washington State, is benefiting from collaboration with two health plans that provide Medicaid managed care and two clinic networks, as well as with patients and specialists in public health and information technology. The study compares the effectiveness of several combinations of interventions to improve asthma guideline use and outcomes.
Some elements of this project are only possible through multi-stakeholder collaboration. For example, interactions with a health plan’s local care managers enables community health workers to provide patients with not only asthma-specific resources but also resources related to other health and social needs. In addition, on-going trainings with provider teams is allowing for a more harmonious and coordinated approach to care management and is transforming asthma care delivery at participating practices. For example, these practices are now testing lung function by using spirometry, a primary component for managing asthma but less widely used in primary care. Participating practices have also established an asthma patient registry that allows them to better plan for patients’ asthma visits and follow-up care.
Health plan care managers and community health workers have also advised the research team about how communications via paper documents and electronic health records can be optimized to share elements of an asthma care plan and allow for more seamless referrals across clinical networks and health plans.
What’s Next for Stakeholder Involvement in PCORI-Funded Asthma Research?
We are excited about the diverse stakeholder engagement taking place in our asthma projects. We also realize that other stakeholders who are likely to benefit from study results may be interested in getting involved. The Asthma Evidence to Action Network, made up of asthma researchers and their patient and other stakeholder partners, aims to foster information sharing across studies and also link awardees with other potential end-users of the findings. The network had its first face-to-face meeting in February 2015. All fourteen asthma projects were represented, with almost half the attendees being patient and other stakeholder partners.
For more information about PCORI’s asthma portfolio or the Asthma Evidence to Action Network, please contact [email protected].
Note - We would like to thank the following contributors to this blog post: John Elder, Kim Erwin, Helene Gussin, Leticia Ibarra, Bradley Kramer, Jerry Krishnan, and Jim Stout.
February 11, 2019, 9:09 PM
Comment by Ryan Lardin,
Hello my name is Ryan Lardin and I am currently an engineering student at James Madison University. I am working on a project to measure and record atmospheric data in the area with a weather balloon that we make ourselves. I was wondering if it was possible for you to put me in contact with someone that would be interested in the data we collect from the balloon and answer some of the questions we have.
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