Patient Partners Background:
The Medical Device Epidemiology Network (MDEpiNet) is a public-private partnership that seeks to advance the collection and use of real-world data to improve patient outcomes. MDEpiNet brings together stakeholders from across the health ecosystem to develop and improve real-world data infrastructure, and carry out studies to better understand how devices perform in the real-world.
Patients are an important partner in this partnership and a critical voice on many of MDEpiNet’s projects. Patient partners work alongside clinicians, researchers, device manufacturers, FDA and other federal agency staff to develop and improve real-world data collection and analysis in a variety of clinical areas. Patient partners bring the knowledge, experience and perspective of the patient community to MDEpiNet projects, advise MDEpiNet working groups on the needs and interests of the patient community and help develop real-world data infrastructure that collects and communicates clinical evidence and outcomes that are of interest to patients.
General Roles and Expectations:
Role and expectations vary with specific projects, but generally, MDEpiNet patient partners:
Serve on a volunteer capacity on MDEpiNet working groups, as follows:
- Attend and participate as a working group member in working group calls and meetings.
- Provide input on the patient perspective and assist the working group on project activities.
In general, a MDEpiNet Patient Partner has:
- Willingness to commit time and effort to the project.
- Personal experience as a patient, patient advocate or carepartner with the disease, condition or treatment being addressed by the working group.
- Good standing within the patient community to gather input and inform project activities.
- Previous experience working constructively with a diverse group of stakeholders.
- Current knowledge of and openness to different treatment options in the clinical area being addressed by the project.
MDEpiNet is currently seeking patient partners who have direct patient experience in the following areas:
|Project||Clinical area||Timeline||How to Apply|
|Women’s Health Technology Coordinated Registry Network (CRN)||Contraceptive implants, intrauterine devices,
long-acting reversible contraception, and sterilization therapies.
|APPLICATIONS CLOSED.||APPLICATIONS CLOSED.|
|Women’s Health Technology Coordinated Registry Network (CRN)||Pelvic Organ Prolapse (POP)||APPLICATIONS CLOSED.||APPLICATIONS CLOSED.|
|Abdominal Core HealthSM CRN||Hernia and abdominal wall operations, hernia mesh and hernia repair related devices||Applications due on May 20, 2019.||Vacancy Posting|
Please contact firstname.lastname@example.org for any questions about the project or the application process.