Attention Oncology Leaders and Patient Communities: New Patient-Reported Outcome (PRO) Instrument Development Initiative for Oncology
November 27, 2023
QualityMetric, an IQVIA business (QM), has contracted with LunaPBC to build a patient-driven oncology instrument for measuring the impacts on physical functioning across many cancers. Cancer group leaders are encouraged to join in this effort to ensure the voice of their community is incorporated. Partnering groups will have access to…
Patients – The True First Authors of Disease
October 30, 2023
What does it take to get attention and establish credibility as a patient community with a complex, understudied disease? For the Arachnoiditis & Chronic Meningitis Collaborative Research Network (ACMCRN), it was a scientific abstract describing information they gathered from their community of patients about living with Arachnoiditis, a debilitating condition that…
The Struggles of Our Superheroes Reveal Their Real Strength: Dr. Catalina Lopez-Correa
August 9, 2023
Seeing our superheroes struggle can be difficult. It’s a view behind the ironworks and cladding. It’s intimate. And frightening. After all, if they too stumble and fall, what fate befalls the rest of us? But seeing that struggle is something else as well: It’s revealing. And it’s there, beneath the…
Standing on the Precipice — Parents of PANS/PANDAS Patients Shunned by the Medical Establishment Unite
June 22, 2023
Alissa Johnson is a mom and an expert in public health policy. After several years working with state legislators and legislative staff on a variety of issues, Alissa started her own consulting firm, Johnson Policy Consulting, with a special interest in advancing policy solutions to promote the health and wellbeing…
Leveraging Community Voice to Bring Effectiveness Back into Efficacy
March 22, 2023
The drug development process centers on producing the desired effect, but has the process lost sight of who gets to define what the desired effect is? This got us to thinking about the difference between efficacy and effectiveness, especially in the age of calls for patient-centricity and inclusion of the…
Blood Donations Provide Lifesaving Treatments and Potential Research Opportunities
January 25, 2023
Through an ongoing collaboration between San Diego Blood Bank and LunaPBC, blood donors are able to support health research along with providing a lifesaving donation.