CreakyJoints Contributes to National Committee for Quality Assurance’s (NCQA) Value-Based Care Model Amplifying Patients’ Voices in Treatment Decisions


CreakyJoints Contributes to National Committee for Quality Assurance’s (NCQA) Value-Based Care Model Amplifying Patients’ Voices in Treatment Decisions




UPPER NYACK, NY (August 21, 2019) – CreakyJoints®, a Global Healthy Living Foundation digital patient community for people with all forms of arthritis, represents the patient perspective among distinguished health provider professional organizations, health networks, payers, and other experts who convened at the guidance of the National Committee for Quality Assurance (NCQA) to assess existing rheumatoid arthritis (RA) disease activity assessment tools.

“We are excited about the prospect of working with a wide range of people who focus on the patient voice and needs. This voice is amplified when patient-reported outcomes are taken seriously by the patient, who is engaging more with technology and health information, as well as clinicians and payers who will incorporate the data into targeted treatments,” said Seth Ginsberg, co-founder and president of CreakyJoints.

In order to refine existing practices and create new value-based care models, the group determined the need for development and implementation of a new RA-specific outcome measure to optimize patient-centered management and treatment for patients living with this disease. The organizations first met for three days in late 2018 and then again at the National Committee for Quality Assurance (NCQA) and Health Level 7 International (HL7) Digital Quality Summit in mid-July this year to identify and address challenges with data capture, performance measurement and rational incentivization of evidence-based, patient-centric care. These meetings resulted in the recently published white paper titled, “Rheumatoid Arthritis: Transforming Care Delivery to a Value-Based Model.”

“Our discussion demonstrated that it’s time to re-think and transform the standard of care for rheumatoid arthritis patients,” said Michael Barr, MD, MBA, MACP, Executive Vice President, NCQA Quality Measurement and Research Group. “New processes and technologies need to support alignment of patient and clinical goals to achieve better outcomes driven by patient-specific needs and preferences.”

Expand Treat-to-Target to Include Patient Reported Outcomes

As explained in the white paper, treat-to-target is the approach recommended by the American College of Rheumatology for managing RA as it allows for shared decision making to adjust treatment and manage strategies according to patient and provider determined goals. While there are multiple clinical tools available to assess disease activity, with many including patient-provided components such as collection of patient-reported outcomes or PROs, the roundtable concluded that there remains a need for a comprehensive outcome measure that integrates clinical measures with validated patient-reported experiences of their disease.  Stakeholders highlighted the importance of both a process measure that may, for example, provide information about whether a specific test is being used for patient care, along with an outcome measure, which could indicate if the patient and clinician are perceiving therapeutic benefits.

Further, there was a need to incentivize both patients and clinicians to use assessment tools so that the collection of evidence was nonburdensome and supported by technology. The group also recommended that any new model must be funded through payment models that value quality over quantity of care, adjusting their support of patient care based on an individual’s preferences and goals.

“As an organization created by a patient for patients, CreakyJoints has a rich understanding of the challenges we face coping with lifelong chronic disease management. As we’ve grown, we’ve developed and introduced tools, such as our ArthritisPower Research Registry, that supports patients’ ability to report their real-time symptoms and treatment experience,” Louis Tharp, CreakyJoints co-founder and executive director, said.

“In order to align the sometimes-disparate treatment goals that patients and clinicians may have, we remain committed to bringing together stakeholders in the healthcare system to develop a more seamless integration of clinical measures and PROs,” he added.

Methodology and Key Findings

During the 3-day forum, dozens of quality, data and practice management experts contributed guidance on the development of an RA outcome quality measure construct that resulted from these meetings following discussion by the core group of experts affiliated with the project. The white paper report is a synthesis of conversations and important work done during the meetings described in this section. The key findings from the meeting include:

  • Clinical tools to assess RA disease activity appear to be underutilized in clinical practice, presenting a barrier to evidence-based care. Further, there is a need to integrate tools that capture real-time patient experience.
  • Practice transformation activities will be required to drive uptake of clinical tools, which may be accelerated by financial incentives, more effective communications, integrating disease activity measurement into the clinical workflow and a shift from process measures to ones that include process and outcome measures. However, the administrative investment required for practice transformation poses challenges, particularly for small practices.
  • Patients and clinicians may define treatment success differently because of the nature of the disease which presents uniquely in every patient, complicating the treat-to-target paradigm.
  • Patients may not see the value in routine assessments via clinical tools and rheumatologists noted that without visibility into how results are being used, patients may become disengaged and grow reluctant to participate in these assessments.
  • Most rheumatology practices use basic electronic medical record (EMR) systems with limited ability to capture and process data from clinical tools among a heterogeneous patient population, which may ultimately hinder quality reporting and Alternate Payment Models (APM) implementation. Notably, the financial cost of practice transformation was identified as a key challenge to rheumatologists’ participation in an APM.

Members of the roundtable included participants representing Allegheny Health Network, Allina Health, American College of Rheumatology, Arthritis Northwest, HealthAdvanta, Geisinger, Florida Medical Clinic, Medisolv, and Yale School of Medicine.

About NCQA

NCQA is a private, non-profit organization dedicated to improving health care quality. NCQA accredits and certifies a wide range of health care organizations. It also recognizes clinicians and practices in key areas of performance. NCQA’s Healthcare Effectiveness Data and Information Set (HEDIS®) is the most widely used performance measurement tool in health care. NCQA’s Web site ( contains information to help consumers, employers and others make more informed health care choices. NCQA can be found online at, on Twitter @ncqa, on Facebook at, and on LinkedIn at HEDIS® is a registered trademark of NCQA.

About CreakyJoints®

CreakyJoints is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients through our popular social media channels, our website, and the 50-State Network, which includes more than 1,500 trained volunteer patient, caregiver and healthcare activists. As part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® with more than 19,000 consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints also publishes the popular “Raising the Voice of Patients” series, which are downloadable patient-centered navigational tools for managing chronic illness. For more information and to become a member (for free), visit To participate in our patient-centered research program, visit

Media Contact: Jessica Daitch | Phone: 917-816-6712 | Email: [email protected]

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About Global Healthy Living Foundation
The Global Healthy Living Foundation is a 501(c)(3) nonprofit organization whose mission is to improve the quality of life for people with chronic illnesses (such as arthritis, osteoporosis, migraine, psoriasis, inflammatory bowel disease, and cardiovascular disease) by advocating for improved access to health care at the community, state, and federal levels, and amplifying education and awareness e!orts within its social media framework. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the digital community for millions of arthritis patients and caregivers worldwide who seek education, support, activism, and patient-centered research through our ArthritisPower® ( Research Registry. In response to the COVID-19 pandemic, GHLF started a Patient Support Program, informed by a patient council made up of people living with a wide range of chronic illnesses, that now serves more than 30,000 people. Via CreakyJoints, GHLF also hosts PainSpot (, a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (, for telehealth and virtual-care support. Visit for more information.

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