This article, published in the Journal of the American Medical Informatics Association, explores how patient-powered research networks (PPRNs) can be used to query health plans’ claims data to identify patients for research opportunities.
Read More
In Arthritis Care & Research, Yun et al. report using the National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS) instruments in substitution for lengthier Patient-Reported Outcomes instruments such as the Routine Assessment of Patient Index Data 3 (RAPID3). 6,154 eligible patients contributed 11,275 observations using 4 PROMIS computer-adaptive testing instruments and the RAPID3. There was excellent agreement between the observed RAPID3 and predicted RAPID3 scores estimated using several PROMIS instruments. PROMIS may be used in place of RAPID3 and other patient global assessment components.
This article published in Rheumatology and Therapy by Radawski et al. identifies and quantifies the unmet needs perceived by United States patients with Rheumatoid Arthritis (RA) currently taking a disease-modifying antirheumatic drug (DMARD). 258 patients were surveyed and only 26% of patients reported that they were satisfied with their RA treatment. Patients not satisfied with their treatment reported higher rheumatic disease impact and half reported a current flare. There is a need for improved disease management among RA patients.
In this study, Ogdie et al. report descriptives of patients diagnosed with Ankylosing Spondylitis (AS) in the United States. Among 235 respondents, women experienced worse disease severity. The most common symptoms that led to seeking medical care included back pain, joint pain, stiffness, and fatigue. The most commonly reported misdiagnoses were back problems, psychosomatic issues, and sciatica. The results highlight differences between men and women in initial symptom presentation, misdiagnoses, time to diagnosis of AS, and the impact of AS on work and relationships.
In this study, Ogdie et al. report descriptives of patients diagnosed with Ankylosing Spondylitis (AS) in the United States. Among 235 respondents, women experienced worse disease severity. The most common symptoms that led to seeking medical care included back pain, joint pain, stiffness, and fatigue. The most commonly reported misdiagnoses were back problems, psychosomatic issues, and sciatica. The results highlight differences between men and women in initial symptom presentation, misdiagnoses, time to diagnosis of AS, and the impact of AS on work and relationships.
There is limited information available about the diagnostic experience of patients with psoriatic arthritis (PsA). 203 participants were interviewed and surveyed about their diagnostic journey with PsA. Participants reported delays in diagnosis and misdiagnoses and reported joint pain and stiffness as symptoms that led them to seek medical care. Participants with joint pain, swollen joints, and sausage-like fingers or toes were more likely to have a shorter time to diagnosis whereas fatigue, foot problems, stiffness, and back pain symptoms reported by participants led to longer diagnosis times.
Patient-Powered Research Networks (PPRNs) are a unique type of patient-powered patient registry for patient-centered outcomes research. Nowell et al. describe the governance structure of a newly formed PPRN and the activities undertaken prelaunch and postlaunch to evaluate and improve the engagement of patient stakeholders in governance. Members of an online community for patients are willing to share their expertise to participate in and shape research governance and are able to provide more specific recommendations for improvement than investigator-led pre-evaluation/post evaluation.
Nowell writes that patient-generated data has the potential to improve health outcomes and drive innovation and these potentials have not been fully realized. Nowell highlights the challenges of collecting and using real-world data, the value and challenges of patient-generated data for real-world evidence and engaged patient research networks. Patients can provide real-world data but must be appropriately and effectively engaged to do so.
This is a proposal for a study to see if wearable digital technology that enables the regular passive collection of patients’ biometric and activity data is strongly related to data captured by patient-reported outcome measures. Participants in this study will be observed for a period of 6 months and will be registrants of ArthritisPower. The results of this study are expected to be published by the end of 2021.
This article describes key issues, processes, and outcomes related to the development of a patient registry for rheumatology research using a digital platform to track useful data about patients’ conditions for their own use while contributing to research. ArthritisPower provides evidence of the value of digital interventions to build community support for research and to transform patient engagement and patient-generated data capture.
