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I received an invite to speak at a European Masterclass in Cancer Patient Advocacy. I reflected on the history and gave a summary of some of the progress we have made.
The following notes capture some of my thinking that I spoke about in my talk in Baveno, Italy.
The nature of involving patients, carers and the public is a growing movement. The seeds are fairly firmly planted in policy in England. To continue the metaphor there are many fine flower beds but there are some barren fields so there is much still to do.
One of the significant ways in which this has taken place is the establishment of groups and the promotion of representation on committees.
These groups have helped me and others to get a greater understanding of what research is all about and what is required. It has provided a sense of community and common purpose about improving research. The community has tended to be populated by white, middle class, semi-retired professional people - like myself.
Some of the groups have been state supported, funded by government bodies and assisted by managers and other staff. The way these groups function often mirror the administration of the organisations. Too often they are encombered with unnecessary levels of bureaucracy with extensive minutes and papers.
These groups have made an important and valuable contribution impacting on policy and practice of research. There is certainly a place for groups to continue to be encouraged and helped progress. There is also a time to let go and encourage self sustainability.
The challenge for us all is how to reach out to others, to enable and empower individuals as well as communities of either interest or locality.
Do people need to become embroiled in committees and groups to be able to make a difference?
I have selected some key themes (in CAPITALS) to explore some of the concepts that need wider discussion if we are to make best use of any resources especially in a time of austerity. I want to see active involvement at all levels of research but we have to consider what makes the best added value.
Is it better to have groups funded INSIDE the organisational structures of research or do groups on the OUTSIDE have the potential to be more effective?
Should we promote greater ADVOCACY, the speaking up and out about what we want from research rather than merely accepting REPRESENTATION at the tables?
How can we report the still too frequent examples of TOKENISM and show LEADERSHIP to address to address this poor behaviour?
How might we promote more INDEPENDENT groups rather than have a DEPENDENT style of involvement?
What actions need to be taken to develop a greater DIVERSITY and move beyond the ALIKE?
How do we remain CHALLENGING and avoid ASSIMILATION into the mores of a committee or board?
What should be doing to enable and empower INDIVIDUALS and communities rather than rely on specific GROUPS?
I have no immediate answers to these questions but do feel they should be discussed.
The most important issue here is that we, as patient advocates, are scrupulously honest and clear about any specific interest with industry, charities and government departments.
But where do we have this dialogue???