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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
Arthritis is one of the most common chronic diseases in the United States. One-fifth of American adults, and half of those 65 years or older, report having a diagnosis of arthritis. About a third of those with arthritis report that it limits their activities.
To mark this Arthritis Awareness Month, Ben Nowell and Kelly Clayton shared their thoughts with PCORI about the Arthritis Partnership with Comparative Effectiveness Researchers (nicknamed ArthritisPower, or AR-PoWER). This partnership was created by CreakyJoints with researchers at the University of Alabama at Birmingham. Nowell is the Director of Patient-Centered Research at CreakyJoints, and Clayton is chair of the ArthritisPower Patient Governor Group.
ArthritisPower is a patient-led, patient-centered research registry for arthritis, as well as bone and inflammatory skin conditions. Joining the registry gives patients access to a free mobile and desktop application to measure and track their symptoms and share their experiences with researchers and healthcare providers.
The ArthritisPower partnership is one of the Patient-Powered Research Networks that make up PCORnet, the National Patient-Centered Clinical Research Network. PCORnet is a PCORI initiative to harness the power of data and unique partnerships to conduct important health research faster, more efficiently, and at lower cost than was previously possible.
How has rheumatoid arthritis affected your life?
Kelly Clayton: I was diagnosed with rheumatoid arthritis (RA) 15 years ago, when I was 22, but I had had symptoms since childhood that went undiagnosed.
Living with a chronic disease like RA can be challenging. RA has made me a stronger, more motivated person. It has taught me to foster patience, reduce stress, and look at things differently. My desire to share knowledge about RA led me to my career path in public health; I work in healthcare administration.
I also volunteer with arthritis organizations, in particular CreakyJoints, to support the arthritis community and share what I’ve learned about disease management. Being active with the CreakyJoints online arthritis patient community helped me see that there are others who understand my struggles and my successes.
While I wouldn’t wish this disease on anyone, it has shaped the person I have become.
Ben Nowell: Working in partnership with people with RA has taught me that although people have very different experiences, they struggle with similar concerns, such as finding a treatment regimen that works over the long term.
Why did you get involved with ArthritisPower?
Kelly Clayton: There are millions of people like me who juggle work, marriage, and family, all while confronting a chronic illness. We are eager to push our understanding of this disease forward. That’s why I became a Patient Governor for ArthritisPower. Patient Governors help prioritize research requests, shape research questions and protocols, and disseminate research findings. Being a Patient Governor allows me to represent patients’ voices.
How does ArthritisPower work?
Ben Nowell: ArthritisPower collects patient-reported outcome measures. Patients describe their pain, sleep, fatigue, physical function, and quality of life. The result is a collection of data that quantitatively tells you and your doctor how you’re doing on your treatment over time. On a smartphone or computer, the ArthritisPower app makes it easy to track symptoms and treatments, and then share that information with a healthcare team or a private group, like friends and family.
After having more than 2,000 users try the app, we will soon be launching a new version with enhanced features. For example, users will be able to superimpose their medication history onto symptom data to view results over time. This will enable patients to work with their physician to determine how a new treatment is affecting symptoms.
The ultimate goal of ArthritisPower is to provide participants with a personalized understanding of their own health while producing data that can help everyone. It will enable researchers to study topics that are meaningful to patients and help patients make healthcare decisions according to personal circumstances, conditions, and preferences.
Why should people join ArthritisPower?
Kelly Clayton: Securely donating health data to ArthritisPower is a way to support the arthritis community. You can also seek out opportunities to participate in research. The more people join and donate their data, the more powerful our information will be.
What research questions would you answer if you could?
Kelly Clayton: For me, a significant, invisible issue is “brain fog,” or cognitive impairment. A project using ArthritisPower data could investigate whether brain fog is a symptom of RA, an indicator of a change in disease state or progression, or a side effect of treatments.
Ben Nowell: Some pressing questions are: What is most effective at achieving and maintaining long-term disease remission for each individual? What is most effective for short- and long-term quality of life improvements for people with RA? What cures RA and other autoimmune conditions?
What do you hope to change with your work on ArthritisPower?
Kelly Clayton: I hope that patients use the ArthritisPower app to become empowered and proactive in managing their RA. While we always need basic science research, patients live the disease. They know what issues are important to them and impact their quality of life. This research may lead to advancements in treatment.
Ben Nowell: I hope to see more and more people living with RA be enthusiastic, yet critical, consumers of research findings and more confident, informed decision makers about their own health care, in partnership with their doctors and other healthcare providers. Health care is complicated, but creating and sharing information to talk about it shouldn’t be.
The views expressed here are those of the author(s) and not necessarily those of PCORI.
May 28, 2016, 5:27 AM
Comment by Abhinav Kapoor,
Thanks for sharing this,as the people suffering from the pain,struggling with this disease would get to help from curing the health issues. ArthritisPower app will help people get to know how they could do fight with disease only using this app at home.
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