Popular ArthritisPower® Patient Registry Expands Conditions and Becomes PatientSpot™


Popular ArthritisPower® Patient Registry Expands Conditions and Becomes PatientSpot™






Susan Jara

Phone: 201-406-7756

Email: [email protected]

UPPER NYACK, NY — The Global Healthy Living Foundation (GHLF) is proud to announce a significant leap in its mission to support individuals living with chronic diseases. ArthritisPower, a trusted disease tracking platform and research registry since 2014, has transformed into PatientSpot — an expansive platform dedicated to providing support through education, conducting patient-centered research, and amplifying the voice of people living with chronic disease to raise awareness about chronic conditions. The PatientSpot platform is now a Food and Drug Administration (FDA) approved Class 1 medical device.

Beyond Rebranding

PatientSpot embodies GHLF’s broader mission to serve the entire chronic disease community by expanding its appeal beyond its digital arthritis community, CreakyJoints®. Patients can now join the registry and its community with any chronic condition they wish to share, establishing it as a truly disease-agnostic platform.

Erik Stone, MA, Associate Director, Learning Experience Design at GHLF, explained, “Many of the patients we assist navigate multiple chronic conditions alongside arthritis. The evolution into PatientSpot addresses these physical and emotional complexities. When we connect this way with the broader chronic disease community, they gain deeper insights and solutions into the real-life challenges they face.”

Where Health Care Meets the Future

“PatientSpot is a pathway to the future of health care because it is designed to emphasize patient-centered power and decision-making,” said Louis Tharp, Co-Founder and Executive Director at GHLF.

He elaborated that as PatientSpot matures, it will embrace patient-inspired artificial intelligence and machine language to create:

  • A confidential culturally aware patient companion
  • A knowledgeable joint-decision team member
  • A controlled communications conduit to caregivers and health care providers
  • A private and secure repository for health data — from wearables and other patient-chosen internal and external devices that collect movement, body state, and habits data as well as medicine efficiency

PatientSpot will take patient-reported outcomes and data to new levels of accuracy, allowing more precise and compassionate patient-initiated therapeutic protocols.

“The more than 700,000 people who visit our multilanguage websites each month will feel at home in this new paradigm because they know us, and, for example, when their health care provider asks the now unanswerable question, ‘how are you doing?’ they can respond with data as well as personal feelings that will accurately portray their past and current health status,” said Tharp.

GHLF encourages users to enhance their PatientSpot journey by ensuring they have the latest version of the PatientSpot app (Version 4.0.0) and staying tuned for upcoming enhancements. Feedback is also highly encouraged by e-mailing Mr. Tharp directly, who is directing the artificial intelligence migration at [email protected].

Empowering Patients and Bridging Gaps: The ArthritisPower Legacy

ArthritisPower’s story dates to 2014, when it was established by GHLF’s digital community CreakyJoints in partnership with researchers from the University of Alabama, Birmingham (UAB) with ongoing financial support from the Patient-Centered Outcomes Research Institute (PCORI). It emerged as an innovative nationwide research registry, focusing on patients with rheumatic and musculoskeletal conditions (RMD), including rheumatoid arthritis, psoriatic arthritis, and spondyloarthritis. The primary mission was to gather real-time data from patients, enabling them to actively contribute to their health care journey while participating in patient centered research. More than 75 peer-reviewed articles, medical conference presentations and posters have been published based on the data from the more than 45,000 participants.

Reflecting on the platform’s history, Shilpa Venkatachalam, PhD, MPH, Chief Patient Centered Research and Ethical Oversight Officer shared, “ArthritisPower was born out of the vision to inspire people with RMD to work alongside clinicians and researchers and bridge the gap between their experiences and scientific advances and insights. The platform has become a valuable resource for patients and researchers alike.”

Patient Involvement and Commitment

As PatientSpot ushers in this new era, GHLF deeply appreciates the contributions made by patients to ArthritisPower over the years. Their dedication and insights have been instrumental in shaping the platform’s future as a comprehensive resource for individuals managing chronic diseases.

“Patient feedback is the compass guiding our every move at GHLF. It shapes our initiatives and directs our mission,” stated Seth Ginsberg, Co-Founder and President of GHLF. “We treasure the insights and experiences shared by patients dealing with arthritis and related conditions. Our commitment is unwavering as we ensure their voices continue to lead our journey.”

About Global Healthy Living Foundation

The Global Healthy Living Foundation is a U.S. based, 501(c)(3) nonprofit, international organization whose mission is to improve the quality of life for people with chronic illnesses by advocating for improved access to health care through education, patient-centered clinical research, support, advocacy, and economic and policy research. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the international, digital community for millions of people living with arthritis and their supporters worldwide who seek education, support, activism, and patient-centered research in English, Spanish, and French. In addition to arthritis and autoimmune disorders, GHLF supports dermatology, gastroenterology, neurology, cardiology, oncology, infectious disease, rare disease, and pulmonary patients through a host of different programs and activities which draw more than 700,000 patients a month to GHLF websites and create more than 10 million impressions a month on seven social media platforms. In addition, a library of podcasts via the GHLF Podcast Network, has more than 500,000 listeners to date. GHLF never asks the public for donations, receiving funding instead through governments, non-governmental organizations, foundations, industry, family foundations and co-founder Louis Tharp. Visit ghlf.org for more information.

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