Tuesday, 17 June 2014

Canada Tales 5 (final segment)

I received this wonderful gift from Laurie Ringeart following the workshop on Friday at George and Fay Yee The Centre for Healthcare Innovation. http://umanitoba.ca/faculties/medicine/units/chi/

For centuries the Innuit have constructed life-like figures of rock called Inukshuks, (pronounced IN-OOK-SHOOK).

They stand as directional beacons to guide travellers. They have become of cooperation and brotherhood for people everywhere. 

Meerat Kaur, noticed my post on LinkedIn and suggested that I might like to the Boon Burger Shack, a vegetarian restaurant  - Excellent food!

On the way there I was walking so I asked for directions of   I asked if she was a student and her reply was that she was an 'auto didactic' - self learner.  

The Forks - This is a great market for local produce, crafts and gifts. It sits at the fork between the Assiniboine and Red Rivers,

The Museum of Manitoba

The exterior of this building hides a superb exhibition that celebrates the whole rich history of the Province.

The Museum traces the exceptional prehistoric finds through the periods of the wild bison to the railroads and the more modern history.

         And more Inukshuk!

The Manitoba Legislative Building is in Winnipeg and is the seat of the Legislative Assembly. The building is made of Tyndall stone which has numerous fossils embedded.

The Winnipeg Art Gallery has an excellent exhibition of 7 Professional Native Artists.   

And, I mustn't forget the exceptional Sunday Brunch at The Fort Garry hotel.

Saturday, 14 June 2014

Canada Tales 4

The corner lookout post

On Wednesday evening we visited Fort Gibraltar, a replica of the settlement built in 1809 by the North West fur trading company formed by locals, French and Scots.

This structure, buildings and layout give an excellent impression of what it must have been like for those early settlers.

The main community building sits in the middle of the fort with numerous other surrounding smaller buildings.

La Maison De Bourgeois

A blacksmith is busy at work, the furs are laid out on the counters as the traders and others carry out their business. These re-enactors were dressed in period costumes and had extensive knowledge of the history, conditions and relationships of the time.

Other provisions, crafts and objects are displayed as if the fort had just been left.
A view from the parapet

Axe throwing, a meal and dancing followed.


                           A good time was had by all.

Friday, 13 June 2014

A Research Active Nation

Simon Denegri, National Director for Participation and Engagement, National Institute for Health Research recently published his strategy paper Promoting a Research Active Nation with a bold ambition...

“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.”

The Policy objectives for the strategy include...
  • Defining health outcomes that matter to people
  • Helping to identify and deliver research of the highest quality
  • Able to choose to take part in research
  • Use the evidence on which their care is based
  • Have a good research experience and recommending it to others
This echoes a number of the same objectives outlined by the Canadian Institutes for Health Research with their  Strategy for Patient-Oriented Research (SPOR)

Canada appears to have much more open view and even has a Citizens Academy. Perhaps we should be making a citizens academy for research in the UK?

There is no real surprise that there are so many parallels between Canada and the UK as there has been close cooperation for years.

Simon has been across in Canada a few times in the last year. His talk on Public involvement in UK health research can be found on You Tube www.youtube.com/watch?v=L_5Xr8BbEYo + Participation des patients et du public dans la recherche en santé - www.youtube.com/watch?v=7QhNywnaA-k

I shall be adding a brief history of patient involvement in the next couple of days along an outline of the presentation.

If you have any thoughts please let me know.

Tweets will be with    #capriresearch      #engagepatientsMB

Thursday, 12 June 2014

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.”

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

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?       

A brief summary of public involvement in research

These notes provide a brief summary of concept and evolving nature of actively involving the public in research governance, process and practice This is developing momentum in many countries across the world. The summary was prepared for the Ca-Pri Conference in Canada.


The earliest recorded example that mentions the public being equal partners with researchers is an article from 1976 on obstetric practice written by Sir Iain Chalmers. The Oxford Consumer Group reported that the public made more adverse comments about maternity services than any other branch of the National Health Service (NHS). From its inception in 1978, lay members were included in the National Perinatal Epidemiology Unit’s Advisory Group.

Individuals from other patient communities also began to ask questions, advocate for greater involvement and make demands to have a greater say in research. These movements for change can be found particularly in the HIV/Aids, Mental Health and Cancer communities. At the same time there were discussions amongst researchers, policy makers and government about how best to engage and involve the public.

Twenty years later in 1996, the UK set up the Standing Advisory Group on Consumer Involvement in the UK’s National Health Service Research and Development (NHS R&D) Programme. This later becomes Involve. The Group's first report to the Central Research and Development Committee stated…

The involvement of consumers in research changes the priorities for research. Simply having consumers present at research committee meetings can have a powerful effect - they remind researchers of the purpose of their work. Yet, with a few exceptions, consumers have had little say in how research is prioritised, undertaken and disseminated.

In 2001 the Consumer Liaison Group (CLG) was established in cancer research as was a similar group with the Medical Research Council. There is now a much greater presence of members of the public on committees, boards and at conferences as speakers and workshop facilitators. (A broader account of the CLG can be found here)

The James Lind Alliance Priority Setting Partnerships provide an effective approach to identify unanswered questions and set research priorities. In 2006 INVOLVE became part of the National Institute for Health Research (NIHR) in England.

The Exploring Impact Report offers examples of the difference involvement is making. More recently a study by King’s College London showed that involving mental health patients in the design and implementation of research programmes increased the likelihood of studies recruiting to target.

Much of the advice and literature reflects the process of involvement rather than its purposes - from improving patient information leaflets through to the more democratic principles of increasing openness and transparency. The latter being most relevant when the source of funding is public money gathered through donation or taxation. The former simply practical.


The National Institute for Health Research, is reviewing public involvement in research and is inviting views and comments on how it can build on its achievements in public involvement so far to create the sort of active collaboration between the public, researchers and clinicians essential to the delivery of its future ambitions for research and a healthier nation.

The British Medical Journal is now also demonstrating leadership in this sphere of patient revolution.

Some Examples of Public Involvement in Research
from Across the World

United Kingdom

INVOLVE is a national advisory group that supports greater public involvement in NHS, public health and social care research. INVOLVE is funded by and part of the National Institute of Health Research (NIHR).

In Wales the organisation Involving People helps bring patients and researchers together. Scotland has focused more on getting people into research with SHARE.


Active involvement in Australia is known as consumer and community participation in health research. The website, Involving People in Research offers many very practical resources and advice.

The Consumer and Community Participation Program is a joint venture between The University of Western Australia's School of Population Health and the Telethon Institute for Child Health Research.


The Canadian Institutes of Health Research (CIHR) is Canada’s federal funding agency for health research. Composed of 13 Institutes, CIHR provides leadership and support to more than 13,200 health researchers and trainees across Canada.

The Strategy for Patient-Oriented Research (SPOR) is a coalition of researchers, charities, policy makers and patients, to ensure that the right patient receives the right intervention at the right time.


The Patient-Centered Outcomes Research Institute (PCORI) helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader healthcare community.


The European Patients' Academy (EUPATI) provides scientifically reliable, objective, comprehensive information to patients on the research and development process of medicines. It will increase the capacity of patients and the lay public to be effective advocates and advisors


NICE Welfare takes up the challenges that relate to the development of inclusive and innovative welfare societies, as they are described in Research2020 and Horizon2020. The project combines fields of research within the social sciences, statistics and medicine that are emphasized as central in both research plans.


Health Talk Online established in UK to gather people’s experience of care and research has partnerships in Australia and Canada.


Chalmers I. British debate on obstetric practice. Pediatrics 1976;58:308-312
Chalmers I. Minimising harm and maximising benefit during innovation in healthcare: controlled or uncontrolled experimentation? Birth 1986; 13:155-64
Mental health and survivors' movements and context: http://studymore.org.uk
Research: What’s in it for Consumers – report published by NHS R&D
Ennis, L. et al. Impact of patient involvement in mental health research: longitudinal study British Journal of Psychiatry (Sept 2013) doi: 10.1192/bjp.bp.112.119818

Wednesday, 11 June 2014

Canada Tales 3

Well, I arrived. Winnipeg is on Central Canadian Time so we are 6 hours behind the UK. 

The flights were good though the exchanged seemed to go on for ever. 

The person in the seat next to me, by chance, is an associate professor in health care at Queens University in Ontario. It was good to hear how patients are an integral part of some of her courses.  Email contacts swapped and now exchanged with Caroline and a colleague. 

I managed to watch Wes Anderson's brilliantly comic THE GRAND BUDAPEST HOTEL 

I wasn't sure what to expect but it was a feast of stunningly assembled still images and tableau captured through windows, doors and any other framing device that Anderson finds. It is a brilliant example of the power of using drama to tell stories. 

It tells, in part of the grandeur of those major hotels where the rich and famous would stop on their tours. 

The Fort Garry Hotel
The Fort Garry Hotel in the centre of Winnipeg has a history of being one of those grand hotels. Built in 1913 in the Chateau style for the the Grand Trunk Pacifice Railway, one block away from the Union Station.

But Fort Garry also has its own stories as I found out

Fortunately, so far, there have been signs of ghosts, deaths, chases or indications of war being declared as happens at The Grand Budapest.

And now to the Conference for my next few entries.

Monday, 9 June 2014

Canada Tales 2

Setting off this morning on an Air Canada Airbus A330-300 from Heathrow to Toronto then a forwarding flight to Winnipeg. 

Flights in reality and flights of fancy. Time to relax, stay calm and enjoy the adventure.

A couple of days ago I penned these few lines in Haiku in response to Simon Denegri's words..

Haiku 1 

Gentle breeze of involvement
Time requires some 
Lightening storms

Haiku 2

Too many questions
Like leaves from tree
Cast on four winds

Haiku 3

Even bleak in winter 
Snowdrops appear
Presence inspiring

Haiku 4

Now summer comes
Fresh buds and thinking
Reflect season

Haiku 4

Are things different
When not, new steps
To be taken 

Haiku 6

Maple leaves calling
Flights of more than fancy
Learn from First Nations

            Tweet with    #capriresearch      #engagepatientsMB

Saturday, 7 June 2014

Canada Tales 1

I have always known a few things about Canada but you begin to find out so much more when you are preparing to visit. I am attending and presenting at a Cancer Primary Care Conference in Winnipeg from 10th-18th June this year.

Dad in Winnipeg c1942
On a very personal level I am so looking forward to the visit because my late father was stationed in Winnipeg during World War II as part of his RAF training. He was there to gain his wings as a Flight Lieutenant and practice navigation across the great lakes.

Further Canadian links are strengthened through my aunt, who like many other Scots emigrated for a better life and lived in Kingston, Ontario for over 40 years.

My parents made a number of trips but this will be my first visit. In fact my first excursion over the pond. I can hardly wait yet as I make my preparations I cannot help but think that I am extremely fortunate to be still alive, almost twenty years, after my treatment for cancer and to be lucky enough to be invited on this journey.

Winnipeg, is in the state of Manitoba and sits on the South Western edge of Hudson Bay. It gets cold, very cold in winter. There is even a street that is said to be the windiest corner in the country. It has a population of over 600,000 roughly the same size as Nottingham City and its urban areas (700,000). 

Our British history books tend to begin with the tales of the Hudson Bay Company   and as a Scot I am drawn to tale of the Selkirk Settlers yet Manitoba is an area with a much longer history with significant challenges that still affect its population in the 21st Century. I am keen to visit the Manitoba Museum in Winnipeg to learn more about the history and see many of the objects of its aboriginal people.

The term that is used in Canada to describe the indigenous peoples is The First Nations. This refers to the original people who are neither Inuit (those from the Arctic regions) nor Metis (those from a mixed descent with Europeans). Within the First Nations there are many distinct ethnicities so I found the Canada’s First Peoples website interesting. The Government provides further background information.

The Assembly of Manitoba Chiefs website has an interesting report on the regions health issues for the First Nations.

Reading this takes me back to my days teaching in the drama workshop in Nottinghamshire. The only resources we had were The Prince and the Salmon People by Clair Murphy and Barry Lopez’s story Crow and Weasel to explore the tales of indigenous people in an exploratory and respectful creative manner. Crow and Weasel has the wonderful line that sometimes we 'need stories more than food to stay alive’. In my own clumsy way I still try to tell stories and use them to make meaning.

In the next week I shall try to unravel some more tales.

In the meantime I shall be tweeting with #capriresearch (Ca-Pri as in Cancer Primary care not Capri as in Mediteranean) and #engagepatientsMB