This is the final update where we present a section of our prospectus. It may be the most controversial part. The participation model of the World Campus is relatively open. We expect this to be a strength. Despite many countries having contrasting political cultures, we have chosen for a model where a hub is immediately drawn into the monthly cycle of presentations, reflections and project development. Experiences are pooled, exploration of opportunities and exploitation of leads are following in quick succession. Group leaders have been appointed and most importantly, every initiative with potential impact is peer reviewed.
Reciprocity and peers review
We risk being accused of rallying, but let us attempt to position ourselves in the grander scheme of things. Reciprocity & peer review reflect one of the core values of democracy: fraternity and solidarity. Fraternity and solidarity imply a procedure for self-correction. The peer review is an inclusive procedure that furthers the improvement of quality.
Reviews are the rule, when:
- a major initiative is undertaken;
- an opinion document or manifest is being published;
- a project or collaboration is defined;
- a new principle of operation (such as the peer review) is installed.
- We do not profess that Inspire2Live will be a reviewer of research reports of preclinical or clinical research. The peer review undertaken by the members of Inspire2Live should be specific, focused on a match between area of expertise and content domain. We are aware that it is rare that patient advocates have the scientific expertise to comment in a truly competent way on the details of research. In addition, we must be cautious to participate in peer review panels that function merely as window dressing: as a means to give the impression that the patients’ opinion is being heard, but actually their presence on the peer review panels does not improve the quality of the review.
- However, and to the contrary, we do believe that the procedure of science (peer review) and the opinion of scientists and experts from “outside” should be imported into our organization, to guide and direct the internal functioning of Inspire2Live and the World Campus: hence our continuous effort to include scholar activists in the World Campus.
Membership rights of the World Campus
Every member has the right to lobby for a peer review. What we say is that a peer review is required if an initiative is undertaken or individual is seeking publicity on behalf of the World Campus.
Peer review is focused on three categories:
- Publications, both internal (on the website) and external (articles, papers, educational materials).
- Initiatives that have a lasting impact on the structure of Inspire2Live (e.g. the World Campus).
- Systematic collaboration with other organizations (e.g. the World Health Organization).
The chair initiates or is requested to initiate a peer review. In case of major publications or initiatives, the chair will seek advice from Bob Weinberg, Laura van ’t Veer, David Lane, Jan Hoeijmakers and Olufunmilayo Olopade. Depending on the objective of the review, chair and advisers may select and approach specialized reviewers. Reviews should be concise, open and engaged. We expect the reviews to require 1 to max 5 participants.
How we expand
Mid 2020 Inspire2Live has started creating the World Campus. Inspire2Live sets up hubs in all continents. It follows some rules ground rules regarding the selection of people who will act as hub representatives in new locations.
- Find Patient Advocates who have been affiliated with Inspire2Live for a number of years.
- Find Patient Advocates through a trusted third party (for example a scientist who is affiliated with Inspire2Live).
The nature of the relationship between hubs is reciprocal. Transactions are of course habitual, but the basis is one of trust and having a common objective: getting cancer under control.
Unlike units in a business, the hubs are loosely connected; there is no franchise-type relationship. This creates huge freedom and potential though it also poses a challenge regarding the maintenance and improvement of quality. Hence all who join Inspire2Live are, without exception, accepting and adopting, in spirit and in word, the principles formulated in the prospectus and the Foundation Principles and Federation principles of Inspire2Live.
Jan Gerrit Schuurman
Patient Advocate Inspire2live