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Vasculitis Patient Powered Research Network.

The Vasculitis Patient-Powered Research Network is open to ALL United States Cryoglobulinemia patients.  Please Register.

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The Vasculitis Patient Powered Research Network (V-PPRN) is a collaborative research effort for vasculitis research involving patients as partners in research along side clinicians, researchers, physicians and interested parties.
It is a joint venture of The Vasculitis Foundation and the Vasculitis Clinical Research Consortium. The Vasculitis Foundation is our trusted vasculitis research partner and is the largest private funder of research on vasculitis. The VF collaborate with researchers around the world to fund the most promising studies. We are proud to work with the Vasculitis Clinical Research Consortium to bring you a new vision for vasculitis research with the V-PPRN.
has the ability to collect and securely store patients’ disease experiences, known as patient-reported data, as well as electronic health records to build robust data for innovative vasculitis research. The Network is patient-powered and patients participate as full partners in the work of the V-PPRN from generating a research idea to the summary of results and all the steps in between!

 V-PPRN Mission

The V-PPRN seeks to transform how clinical research in vasculitis is conducted by directly engaging patients, investigators, care providers, and health systems to develop research methods to electronically collect health records and patient-reported data on a large number of patients with various forms of vasculitis.  The goal of the V-PPRN is to conduct high-quality studies that will improve the care and the health of patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis.

Patient-Engagement in Network Governance

Central to V-PPRN governance structure is the theme of patient leadership, engagement and group consensus throughout all aspects of network design, implementation and governance.  Fully embracing the belief that patients and families should be full partners with investigators and clinicians in research and care, the Co-Principal Investigators include Dr. Peter Merkel, MD, MPH and George Casey, MBA, patient-partner.  The patient-academic-clinician shared leadership model replicates itself at all levels (Steering Committee, Working Groups, V-PPRN Patient Advisory Council) having a mix of stakeholders that include academic health care professionals and patient a

Medicine X 2013: Epatient

medicine x

It has been a hard health year for Marianne and I but through it all we have been epatients.  We have tried to educate, engage and evolve along with the challenges.

One of the biggest personal challenges I have had to adjust to is that my health did not allow me to attend Stanford Medicine X 2013.  I too was granted an epatient scholarship to attend the conference, along with 34 other epatients.  I was looking forward to attending but you learn to adjust, adapt and accommodate when you have a chronic illness.  In the 2 plus months prior to Med X, I had a serious lung infection and could not get well.  Larry Chu and I spoke by phone and he assured me that I had to put my health first and miss the conference.  Larry said he would honor my scholarship for next year, 2014; for which I am very grateful.  Thankfully, the mainstage of the conference was livestreamed so I watched from the comfort of my couch.

Medicine X has been an integral part of the evolution of Alliance for Cryo.  I had hoped to network, connect and shake hands with the people I admire so much but the beauty of MedX was that I got to connect with folks via Social Media.  I am still playing catch up and trying to connect with all the amazing attendees.  Social media means so many things but to me it is a tool towards social justice.  I am a longtime activist born and raised in the heart of the streets disability civil rights movement, Berkeley, California.   I grew up knowing something was wrong with my body and identified with people with disabilities.  I learned to sign fluently, using American Sign Language by the time I was 14.  I became a sign language interpreter, Deaf advocate and part of the community trying for social justice. I went to college at the time The Americans with Disabilities was enacted in 1990.

I saw the same trifecta of themes at MED X; activists, advocates, and people with disabilities trying to get access, exercise their rights and share their lives and stories.

  • The new activists: epatients.
  • The new activist location: the internet.
  • The new action: better health care.

The epatients, healthcare providers and researchers I watched were all unique and diverse but united in one thing – improvement in health care with epatients at the heart of it all.