ARLINGTON, Va., Dec. 13, 2018 (GLOBE NEWSWIRE) -- Inspire, the leading healthcare social network for patients and caregivers, is offering new opportunities for academic research partners to participate in the expansion of its Health Profiles data platform.
Patients on Inspire demonstrate a consistent willingness to be studied and heard. Members readily contribute details of their patient journeys to help others better understand their health, and to make their conditions, including rare diseases, easier to study as a whole.
Built directly on these insights, Health Profiles uses standardized data to strengthen peer support, develop detailed accounts of clinical trial experiences, and accelerate clinical research efforts.
Through Health Profiles, members representing more than 3,600 conditions are presented with questions about their condition, overall health, and behavior. Inspire uses this information to provide open survey data back to members, as well as more focused opportunities to connect with similar patients.
Placing this information back into the hands of patients has helped make some of the largest support networks on Inspire, like psoriasis, at over 180,000 members, feel more tailored and personalized. It also enables Inspire’s 250,000+ rare disease members to communicate experiences in a way that is directly translatable to the basic, clinical, or real world research process.
“The Health Profiles platform addresses many of the challenges that make rare disease research difficult today,” said Jeff Terkowitz, Inspire’s Vice President of Product. “A lack of readily-available patients can make studies difficult to coordinate, and even once in place, the tools and health records used often don’t provide enough actionable information over the course of a patient journey.”
The anonymized data that Health Profiles generates allows researchers and partners to:
- Unlock research gaps using an existing library of longitudinal, endemic-specific instruments.
- Identify and engage with cancer and rare-disease patient populations based on specific clinical trials experience and interest
- Rapidly deploy and review validated Patient-Reported Outcome (PRO) measurement tools
- Test new measures and variations using real patients and a standardized platform, fully integrated platform
- Further the exploration of complex disease underpinnings. This is done through correlations of structured and unstructured data and phenotypes reported by patients with other data types such as genomics/multi-omics and other biological data
Community-specific instruments have been developed alongside a network of nonprofit organization partners, including the American Lung Association and the Ovarian Cancer Research Alliance. Additional opportunities for collaboration are available as the pilot programs for validated Patient-Reported Outcome measurements are developed for early 2019. Research organizations that would like to apply to participate in these pilot programs should contact Odin Soevik, Inspire’s Product Manager, via team@inspire.com.
Research areas of interest include select member cohorts on Inspire:
- Sarcoidosis - 45,000+ members
- Scleroderma - 40,000+ members
- Brain Tumors - 35,000+ members
- Bladder Diseases - 55,000+ members
- Breast Cancer - 65,000+ members
- Liver Cancer - 25,000+ members
- Lung Cancer - 100,000+ members
- Prostate Cancer - 35,000+ members
- Thyroid Cancer - 60,000+ members
- Eczema - 45,000+ members
- Neurofibromatosis - 30,000+ members
- Skin Cancer / Melanoma - 25,000+ members
- Leukemia/ Lymphoma/ Myelomas - 15,000+ members
“Health Profiles is the best place to put patient-reported outcome measurements to work,” said Soevik, “as our clients and partners are able to generate actionable data from more than a million patients and caregivers. We want to unlock research gaps while putting patients first, and this expansion is a step in that direction.”
About Inspire
Inspire is the leading healthcare social network, with a mission to accelerate medical progress through a world of connected patients. The company creates and manages support communities for more than one million patients and caregivers, representing some 3,600 conditions. Inspire consults with pharmaceutical companies, leading medical centers and government agencies to integrate patient-centricity into the pharmaceutical product lifecycle and patient care journey, accelerating and improving R&D, and clinical trial design and recruitment through post-marketing brand/unbranded activities and pharmacovigilance.
Media Contact
John Novack
Director of Communications, Inspire
john@inspire.com
(800) 945-0381
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