Part of the Team

Notes of the Presentation at the Cancer Primary Care Conference

Thursday 12thJune 2014 - 0900 (CCT) 1500 (GMT)

in Winnipeg, Canada

Domhnall MacAuley, Associate Editor on the Canadian Medical Association Journal (CMAJ), provides his view of the presentation on his CMAJ Blog.

The talk begins with a piece of music by Martyn Bennett - a Scottish Canadian who died from cancer when he was in his thirties. Appropriately it comes from his album Bothy Culture.  A bothy is an open access buildings providing shelter from the snow and storms for those people from all backgrounds who are keen to climb mountains in Scotland.

The presentation set out to describe the vision and benefits of involving the public in the research process in England; list the practical challenges that have been encountered; offer an approach to reach agreement between researchers and public participants on context, purpose, impact and benefit; to signpost and use resources available to researchers and public to form these partnerships; and help people to be committed to enhancing patient participation in the process of primary care research

Some pictures of the Winnipeg Jets ice hockey team illustrate that we want to be part of the team and clarify the differences between Participation - Involvement - Engagement

Participating in research being akin to supporting the team - a sense of hope along with your consent, involvement being part of the team - in amongst the players and engagement being akin to just receiving the fanmags but not getting to the game. 

Engagement in Canada is more akin to how the UK would describe active involvement.

Involvement is becoming an increasing agenda many in research organisations from governmental to pharma companies. 

The UK Research Excellence Framework is requiring universities and all research to address IMPACT. The guidance talks about the need to demonstrate reach and significance. 

Technology & Social Media are also helping to transform the landscape. 

It means that involvement is becoming more of a way of life rather than just a tick box.

A recent research project in the UK, has produced a Public Involvement Impact Assessment Framework (PiiAF). This has identified 5 key normative values for active involvement as being: Ethics, Action/Change, Accountability, Rights and Empowerment. 

These concepts are a helpful contribution to help us think of the bigger picture when we are working together on individual studies, in governance and policy making.

The involvement in cancer research was helped enormously by a strong patient involvement at local services level. The National Cancer Research Networks were in same geographical configuration. The Initial push was by women with breast cancer and there was a pull by Departments of Health and some leading clinicians. It has increasingly become part of policy statements and is enhanced by the National Cancer Research Institute (NCRI)

It has taken over 20 years

The changes brought about by members of the NCRI Consumer Liaison Group have been...

• From influencing government policy to the strategic governance of cancer research.
• From shaping research questions to study management and dissemination.
• From setting up partnership groups to working across Europe.
• From enquiring about research to helping others to learn.

Newer organisations, such as the Independent Cancer Patient Voice (ICPV) have taken learning and development for the public to a new level with their courses on understanding cell biology.  

Much of this has been done without any written vision. We did it because it seemed right and we just got on with the task.

Simon Denegri, National Director for Patient Participation and Engagement, National Institute for Health Research in England has recently published his strategy for Promoting a Research Active Nation

“Every citizen, by helping to design or take part in research, sharing their data or fundraising for a medical research charity, is contributing to a ‘research active’ nation focused on best health for all, through high quality research.”

Promoting a Research Active Nation - NIHR Strategy for Participation and Engagement 

Why is involvement important for cancer and Primary Care research?

• Science - precision based treatments will increasingly involve patients getting or not getting on studies. They will turn up asking questions
• Relevance - clinicians in primary care have a better understanding of what is appropriate for patients in the context of their families, homes and communities. The research can be more appropriate.
• Demographics - the increasingly ageing populations will bring co-morbitities that primary care needs to address
• Financial - less money about so more important to ensure research meets patient experience and actual need
• Relationships - I believe it is far better to have conversations about research with your Patient Partnetship Groups in General Practice than talking about the reception area. Research provides a distance discussion
• Shared decision making - people I have met in research along the way seem to have more meaningful discussions with their health care professionals
• Better health - Increasingly I hear patient reps, advocates talking about a far greater understanding about their health and wellbeing.

Involvement is becoming a worldwide movement. 

I have posted a brief summarised history along with some information about what is happening in different countries. Please let me know of any others.

Involving cancer patients and other community members in helping us steer the development of this research has been so essential that I have no hesitation in saying that it would have been professionally negligent and incompetent not to go down that track. 

We invested two whole years in trying to understand the issues from their perspectives and I think we have avoided falling into some big black holes as a result…………

Professor D’Arcy Holman, Chair in Public Health,  University of Western Australia

The challenges to involving people can be 

• Expectations - make sure that people's are clear about what to expect of each other
• Advice and support - ensure that you have identified some people or websites to help
• Resources - find some pump priming money before research funds are approved
• Time - only agree to do what you can. Better to achieve something simple
• Attitudes - you have to allow time to build trust

Some Practical Advice

• Plan the meeting - think about how the patient is feeling
• Choose a neutral venue - hospitals and clinics bring back memories
• Think Hospitality - a cup of tea and a biscuit
• Offer to pay Out of pocket expenses 
• Say Thank You
• Results - Let people know about what has or has not happened

Plan for effective involvement by writing a few lines about the...

• Situation – What we are about & what you can expect?
• Task – What is required and why?
• Action – What needs to be done by when?
• Result – What difference to the research, the researcher and the lay person?
• Knowledge – How is this been shared with others?

                             …we are a simple S.T.A.R.K. reminder of purpose

The public can also help to raise awareness to improve access to research studies.

For example the International Clinical Trials Day held around the 20th May each year - please add your pictures and stories on Facebook 'NIHR OK to ask'.

Also mentioned the Mystery shopper and the UK Clinical Trials Gateway 

Penultimate slide was on sources of further information

Canadian Museum of Human Rights

The final slide was a picture of the Canadian Museum of Human Rights that is due to open in Winnipeg in Sept 2014.


Accompanying the picture was the simple question: 

Should asking about research 
be a human right?