How to start a hub

An overview from Inspire2Live’s Egypt hub

Along the years, Inspire2Live has brought together passionate, generous and inspirational individuals from around the world to connect, share and collaborate. Inspire2Live strives to improve patient-centricity in cancer research, advocating patient involvement in all forms of research and development, new treatment evaluations, clinical trials and patient care, to name a few, realizing the importance of the presence of educated patient advocates onto authoritative, regulatory and advisory bodies.

We represent the interest of patients and citizens at large, and the representatives are patient advocates themselves who view healthcare in a comprehensive and critical way to improve and speed up innovation that is relevant to outcomes that matter to citizens and patients. This should be an indispensable part of the decision making infrastructures in healthcare.

Inspire2Live is dedicated to achieving all the objectives it sets out to do and the hubs of the Inspire2Live world campus will aim to do exactly that, with similar vigilance. Each hub will aim to bring stakeholders together from all spheres: patients, advocates, academic institutions, scholar activists, health care service professionals, data scientists, politicians and industry to work together and to benefit each other while also bringing together people from different nations, to celebrate each other’s achievements, innovations, approaches and insights.

The following are suggested preliminary approaches that Inspire2Live may adopt to start a hub:

  1. Explore the local health landscape, the relevant health care system, national healthcare schemes and patient rights to reimbursement (pubic health insurance system) of a specific country setting.
  2. Feel comfortable with communicating Inspire2Live’s vision.
  3. Determine some of the pertinent stakeholders in a country hub context.
  4. Draw out a basic concept on criteria required for the initial members (for example, patient advocates with a high level of education that allows them to work their way through difficult topics and who command respect in all realms and discussions) and start building a network, or coalition of the willing, ready to pursue action.
  5. Discuss the objectives of Inspire2Live with all stakeholders in a peer approach and delineate ways of coming together with a common goal.
  6. Research the current guidelines adopted by regulators in a particular country setting related to applicable ethical standards such as GCP, among others.
  7. Address community development through institutional embedding of interactive policy making, reach and education.
  8. Define approaches for funding and clearly identify direction.
  9. Philanthropy: sponsorship of various initiatives.
  10. Academic research institutions.
  11. Governmental, EU level-EMA-FDA equivalent.
  12. Collaborations for funding of initiatives with other relevant stakeholders.

The ultimate aim is to increase public understanding of patient advocacy, interest and participation for the benefit of innovation and the meaning of a patient’s right to a well-informed personal therapeutic plan.

Ghada Ibrahim and Jan Gerrit Schuurman