About Us

Who We Are

The Patient Research Exchange (PRE) was founded by a group of patient advocates from Patient Organizations (POs) across a broad range of conditions and geographic regions to foster mutual learning and collaboration. The Steering Committee for the Patient Research Exchange came together after having exchanged ideas, experiences, and expectations concerning active patient involvement in clinical trials and generation of patient based evidence at a global patient forum in 2014. An Editorial Board comprised of members of the steering committee manages the Patient Research Exchange website.

Mission

To provide a platform that facilitates communication among patients, patient advocates, patient organizations, and all other relevant stakeholders about patient engagement in research that will result in:

  • Better understanding of and opportunities for patient engagement in research
  • Closer collaboration between patient advocacy leaders across disease states and from around the world
  • Appropriate alignment and optimal positioning of patients in research
  • Increased effectiveness of patient engagement through shared learning based on practical experiences
  • Identification for all stakeholders of opportunities for patient collaboration in research

Vision

Patients will be meaningfully engaged in research at all levels with appropriate roles throughout the research process. The value of the patient perspective and experience will be integral to any research activity that affects patients. Patients Organizations and patient advocates will be afforded the opportunities and necessary support to achieve optimal value from participation and to assure mutually beneficial experiences. Patient engagement will ultimately lead to better outcomes for all patients.

Values

The Patient Research Exchange (PRE) values research as an essential activity that has the ultimate goal of improving the well-being of those living with disease or other health-related condition. The PRE is based on the fundamental value of the patient as a partner in research, with the right and responsibility to be fully engaged in any research activity that affects his/her personal well-being as well as that of any patient community or population represented. The PRE values the patient as a whole person and believes research should take into consideration the diversity of medical needs, healthcare conditions, cultures, geographic location, and economic realities.

We believe that by sharing our ideas and perspectives, working together by building capacities and capabilities, and by participating in research actively, we can develop appropriate frameworks and promote supportive attitudes around patient active engagement in research.

We believe that strengthening the patient position in research and development will lead to new therapies which are more targeted to patient needs and better equipped with patient relevant data. An effective PRE will enable clinical decision makers to have a better evidence base to deliver patient centered decisions together with the patient.

We believe that by sharing our ideas and perspectives, working together by building capacities and capabilities, and by participating in research actively, we can develop appropriate frameworks and promote supportive attitudes around patient active engagement in research.

Our Network

Rules of Engagement

Patient Research Exchange is a platform developed by patient advocates to represent patient communities. The participants should be patients, patient advocates, Patient Organizations, caregivers, healthcare professionals and other stakeholders engaged in research affecting patients and patient outcomes. The PRE is open to all those who support our mission and values and wish to actively contribute, share experiences learns or increase capacity for patient collaboration.

The Patient Research Exchange website is not a commercial venue nor is it a place for companies or individuals to seek to sell, market, or promote products, treatments or services for financial gain. Additionally, it is not a venue for market research, focus groups, surveys or any other type of commercially motivated research. Please note that any messages posted to the Patient Research Exchange deemed to be commercial in nature or commercially motivated may be removed, and also the poster, at the sole discretion of the Editorial Board described below.

Editorial Board

The Editorial Board is comprised of members of the Steering Committee, which selects, coordinates and moderates the content, topics and discussions. The guiding principle is material will make the Patient Research Exchange meaningful to intended users and to ensure the integrity of the Mission, Vision and Values.

Ownership & Sponsors

The content of the Patient Research Exchange is owned by the steering committee that represents the consortium of participating Patient Organizations. The platform is supported and funded by Novartis Pharma AG. It is operated by the Editorial Board. Sponsors can participate in the forum like other members and have no special rights or privileges.

Sponsors can participate in the forum like other members and have no special rights or privileges. Sponsors do not assume any responsibility for the content.