the global brain exchange principles - draft ndv5 - edited 25 sept

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Page 1: The Global Brain Exchange Principles - Draft NDv5 - edited 25 Sept

The Global Brain Exchange Principles

GBX is a host, catalyst, and facilitator allowing individuals and organisations to engage, self-organise and collaborate to reflect our Vision and Mission.

Our Vision: The defining solutions of our time will only come through collaboration

Our Mission: Unleashing the collective power of passion, capability and knowledge to

accelerate a cure for disease

As Members of the Global Brain Exchange: A. We believe

1. Population health is a fundamentally important ‘global commons’ that plays a critical role in

shaping human society, the global economy and the natural world. 2. Brain cancer is an indiscriminate harm to population health requiring collaborative international

effort to most effectively substantially reduce hazards to patients and costs to society. 3. Patients have the right of access to knowledge and a choice of treatments that do not diminish

their optimal health opportunities, negatively impact on them, or are imposed on them. 4. Individuals, communities, companies and governments share the responsibility to minimize the

harms of brain cancer by investigating, developing, sharing, implementing or providing solutions and measures that best and most cost effectively meet the diverse needs and wants of patients.

5. Many diverse lines of inquiry deserve investigation, while competition for resources, recognition,

intellectual property rights and commercialisation present ethical challenges over priorities. 6. The way knowledge, treatments and results are developed and distributed needs transforming. 7. Collaborative approaches that create diverse and efficacious prevention and treatment options

will accelerate optimal patient outcomes, increase human prosperity, and reduce societal costs. 8. Any system we create must enhance patient protection and act in the mutual interest through

the equitable distribution of costs and benefits across all possible collaborative relationships. 9. “Everyone needs help from everyone”1 in seeking and being open to new questions and answers

that minimise ‘going wrong’ and maximise ‘going right’2 10. A Mutually Assistive Community3 will deliver faster more efficient and equitable outcomes. 1 Berthold Brecht in Wadsworth (below)

2 Building in Research and Evaluation – Human inquiry for living systems, Yoland Wadsworth, 2010, p.141

3 “The mutual assistance community…[in] most tele-care organizations … people are divided into classes:

primary users, i.e., elderly or impaired people in need of assistance; secondary users professional providers of

care, e.g., doctors and nurses); and tertiary users (society at large). This artificial classification limits the

effectiveness of optimally recombining the available assets into an effective and timely response to requests for

assistance. Furthermore, this classification into an active part of society, able to contribute with worthy services,

and a ‘passive’ part only on the receiving side is already a source of discomfort for people that are thus brought

to feel they were once part of a society that now confines them to a lesser state and dignity. The mutual

assistance community (MAC) is a social organization that avoids such classification… the users are just

members of a community...” On the Constituent Attributes of Software and Organizational Resilience,

INTERDISCIPLINARY SCIENCE REVIEWS, Vol. 38 No. 2, June 2013, 122–48 Vincenzo De Florio

Page 2: The Global Brain Exchange Principles - Draft NDv5 - edited 25 Sept

The Global Brain Exchange Principles

B. As independent, autonomous individuals we have a personal responsibility to recognise we each have causative and corrective responsibility for the whole system—that is, we comprise the system—and that it is us that will reduce and prevent serious harms associated with the incidence and impacts of brain cancer for all past, present and potential sufferers through our individual and shared commitment to enact system corrective responsibilities. We therefore commit to:

1. Drop competitive egos to welcome others by demonstrating we can be trusted to align with the GBX Vision and Mission and to act with integrity and the spirit of collaboration at all times.

2. Ensure integrity in the use of all ‘resources’ (human, knowledge, monetary etc) to co-create and

maintain relationships that do no harm to individuals, groups or the whole system. 3. Be individually and collectively flexible to changing environments, funding opportunities, risks,

emerging research directions and alliances with trusted stakeholders; retaining integrity and mission alignment as we co-develop our capability, maturity and critical mass.

4. Be people that resource and facilitate each other’s inquiry and co-inquiry to create a self-

organising Mutually Assistive Community and outcomes for the benefit of all4. 5. Be radically transparent about efforts and decisions, seek open source collaboration and

feedback, and share lessons with others to support involvement, leadership and co-contribution. 6. Set clear aims to explore the full range of options (e.g. surgical/ clinical/ pharma and alternative

methods), accelerate development of treatments, build on existing solutions for other cancers/conditions, avoid costly duplication, and utilise ‘big data’ as opportunities are developed.

7. Demonstrate leadership by focusing and prioritising respective and collective activities toward

highest gain reductions in patient risk and hazards in the short, medium and long term. 8. Employ ‘living systems thinking’ to assist those most vulnerable (e.g. children) while avoiding

unnecessary harm or unwanted service for patients able to inquire effectively for themselves5. 9. Provide support in the development, prioritisation, incentivisation, funding and implementation

of well-designed, cost-effective approaches that promote certainty in research, development and deployment of patient-oriented options over the short and long term.

10. Use our trusted relationships and collective influence to co-develop new models for equitably

sharing Intellectual Property or incentivising collaboration for faster breakthroughs. 11. Engage with and contribute to the work of GBX to support the successful hosting of non-partisan

forums and alliances that advance the aims and implementation of the organization’s intent.

4 Building in Research and Evaluation – Human inquiry for living systems, Yoland Wadsworth, 2010

5 ibid - after “‘Do unto others what you would have them do WITH you’ prevails (or ‘Do not do unto others

what you would not have them do to you’ plus its deeper corollary, ‘Do not automatically do unto others what

you would want them to do unto you’). … beyond the ‘golden rule’ found in all major human religions.”