Why Measuring Value in RA Treatment Presents Big Challenges


High-cost treatments for rheumatoid arthritis has fueled the need to better understand their value to healthcare systems and patients.

At the Academy of Managed Care Pharmacy Managed Care and Specialty Pharmacy (AMCP) Annual Meeting, in Boston April 23 to 26, 2018, Jeroen Janssen, PhD, lead scientific advisor of the Open Source Value Project at the Los Angeles-based Innovation and Value Initiative (IVI), discussed various approaches to assessing value.

For example, many current value frameworks rely on approaches from the American College of Cardiology, Institute for Clinical and Economic Review, American Society of Clinical Oncology, National Comprehensive Cancer Network, and Memorial Sloan-Kettering Cancer Center.

What’s missing
The challenge is that many tools lack the following, according to Janssen:

  • Patient-centeredness
  • A system perspective
  • Appropriate provisions for updates as new data are obtained
  • Transparency about methodologies
  • Engagement among all stakeholders

What makes measuring value particularly challenging, he said, is that the concept of value changes over time, particularly as competing interventions become available, evidence-based efficacy and safety increases, and prices change, he said. Clinical heterogeneity-such as patient characteristics and setting and context-are also important, as is methodological heterogeneity.

He discussed the IVI’s Open-Source Value Project, which is developing open-source, consensus-based models for value assessment. Janssen described these models as “open, collaborative, and iterative.” They include crowdsourcing and engage multiple stakeholders, including researchers, providers, patients, payers, and manufacturers.

Regardless of the approach to assess value, Janssen advocates for one that includes multi-stakeholder involvement and that is based on all the relevant and up-to-date evidence.

Value measured from multiple perspectives

Another panelist, Jeffrey Curtis, MD, MS, MPH, professor of rheumatology and immunology at the University of Alabama at Birmingham, pointed out that different stakeholders focus on different characteristics that should be measured regarding rheumatoid arthritis.

For example, a clinician focuses on tender, swollen joint count during a physical exam or X-ray damage, whereas physician groups focus on adherence to clinical guidelines and care pathways, and payers care about the cost of the care.

A patient doesn’t focus on any of that, said Curtis. What does a patient care about? Physical mobility and disability, pain, fatigue, and social engagement.

That’s when he discussed PCORnet, which includes EHR data from more than 120 million patients across 13 Clinical Data Research Networks (large consortiums of large health systems or networks), 20 Patient-Powered Research Networks (such as patient registries including ArthritisPower), and two Health Plan Research Networks (Anthem and Humana).

What helps in capturing data from patients is using a tablet-based application at the point of care, according to Curtis. He cited the example of patient-reported outcomes using the user-friendly READY iPad System, which captures data from patients based on their conditions; this system is linkable to the EHR.

Having this patient-reported information during their patient visit allows clinicians to focus on areas of the body the patient is most focused on, and it presents longitudinal information to the clinician, so they can show patients the efficacy of treatments over time-and this can help to convince patients stay on their treatment regimen, he said.

Access to this information in the aggregate is also valuable, in addition to data reported in randomized clinical trials, administrative claims, and rheumatology-specific EHR-based registries, such as the American College of Rheumatology’s (ACR) Rheumatology Informatics System for Effectiveness (RISE) Registry, because it can provide insight into the value of treatment for rheumatoid arthritis. While he said this is challenging work, Curtis projects that implementing and linking such tools can be accomplished this year.

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