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.

Background: 

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.

Currently 

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.

Australia

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.

Canada

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.

America

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.

Europe

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

Denmark

Narratives, Indicators and Concepts in Changing European Welfare Societies

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.

PLUS: 

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

Sources

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

Joseph Rowntree Foundation http://www.jrf.org.uk/  http://www.jrf.org.uk/publications/browse/category/u#user-involvement

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

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

FORT GARRY HOTEL WINNIPEG CANADA HAUNTED

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.

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

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

Challenging the Status Quo

View from my room

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???

Having more research opportunities available for patients - the role of a Clinical Research Network

Next week sees the celebratory day of a continuing effort to raise awareness about clinical research in the NHS. Ok to Ask is an all year effort to get the public talking about research. If you are doing anything let us know on Facebook

On Monday 12th May, I facilitated an event on Advanced Care Planning for the South East Coast Clinical Senate. I also visited Kent, Surrey and Sussex CRN. Research repeatedly shows that people want to die at home but despite all the evidence the reality is that people 

One presentation by Prof Sube Banerjee clearly showed that when we involve people in thinking about and planning for their care especially at end of life that satisfaction levels about service.

This is Dying Matters week with some excellent reports by the National Council for Palliative Care. They are tweeting with the hashtag #YODO - You Only Die Once. This video is fantastic.

Patients were at the heart of asking for more research into end of life care.

So when we are involved in 'research' it is important to remember to drawing upon existing evidence about what people want and asking what commissioners and others are doing to put best evidenced-based care into practice.

Our role is being 'actively involved' is to ensure that research is closer to the needs of the patient, closer to the experience of real people and to improve care, treatments, services, diagnosis, awareness and prevention.

1. THINK PERSON - what do people who want to take part in research need to participate, get involved and keep in touch? Are the organisations person focussed and driven? Are they working together in a joined up manner? What are YOU doing to bring in people's experience to the table and how are YOU communicating with a diverse range of communities and conditions?

2. PLAN STRATEGICALLY - focus for the Clinical Research Network is the delivery of research studies to people who want to take part. 

• With Research Design Service, Academic Health Science Networks, the Collaborations for Leadership in Applied Health Research and Care + with NHS to coordinate and avoid duplication
• We need to consider working together to help people engage with research, be able to take part and to be actively involved.
• There should be a local Calendar of events, a single point of Contacts and a Newsletter to let the public know what is going on.

3. ACCESS - Websites for a start!

The patient voice can help ask questions about how people are able to access research opportunities...

• Is research mentioned on the Trust website home page? (From a clear top tab to a side a-z directory)
• Is there a section about 'taking part in research'? (Explanation about research to the value of participating?
• Can I find out 'how to take part in specific studies'? (From a clear list of open studies to named contacts)
• Am I encouraged to get 'actively involved'? (From local initiatives to advice from INVOLVE)
• Is there any mention of NIHR and working in partnership (From general statements to the LCRN)

I use a simple, highly subjective, RAG rating to give me an indicative score so that I can judge just how public friendly we are to encouraging the public to participate, get involved and keep in touch with research.

We should also ask about equality and diversity in terms of who is being recruited and if all geographical areas of the Network are being covered.

The public can contribute to improving the delivery of studies by considering the actual practicalities as well as feasibility (Thinking about the additional burden of taking part)

There also needs to  Involvement and Engagement - clear statements about how to get involved

4. QUALITY - Almost all service organisations would check with their customers.

• Experience - We are discussing how we will measure 'patient experience' of the process of taking part in studies. We are keen to find out about the actual journey and whether the person would recommend it to others
• Involvement - We are developing a survey of how people have got actively involved and whether it has been worthwhile.
• Learning & Development - We are requesting a report of the numbers of patients, carers and public who have taken part in learning opportunities.

5. AWARENESS - This is a clear responsibility of Clinical Commissioning Groups, General Practices and Hospitals to let people know about research. The Networks can play an important role in influencing and informing these others.

Finally there is a review of Public Involvement in Research - #BreakingBoundaries 

What questions about evidence and research might help those who commission services?

These days I find that as I go to meetings or take part in telephone calls that I get asked questions or to give my opinion on certain issues. I am using these opportunities to put pen to paper, help clarify my thoughts and make statements that lead to improving research.

Today, I was asked what I would say and ask Area Commissioning Teams and Clinical Commissioning Groups that might make a significant difference to achieving the best evidenced based care, treatment and services in health and social care. So, here is my initial list...

Questions about evidence and research to help those who commission services.

1. How are you working with your Local Clinical Research Network to find out what studies and trials are available for your patients? 

Notes: There will be opportunities to engage and join the Partnership Group which brings local bodies together. You could also ask them what they are doing to engage and involve you?

2. What contact have you had with the Collaborations for Leadership in Applied Health Research and Care (CLAHRC) who are tasked with looking for evidence that will make a difference to NHS care and treatment?

Note: You might like to ask how the CLAHRC and the Academic Heath Science Network (AHSN) is working with patient groups and local communities to ensure that patients experiences are helping prioritise issues that need researched? You could ask your Clinical Senate how they are helping to raise awareness and promoting research across the NHS in your area?

3. What are you doing to engage and involve your local GP Patient Partnership Groups in helping address evidence based care? 

Note: You could ask some of your research active clinicians to write articles for the National Association for Patient Participation (NAPP). 

4. How many of your General Practices, Clinics and Care Homes are active in getting people to participate in clinical research and other well designed studies?

Note: There is a growing correlation between research active practice and better health outcomes. You might help bring together people interested in best evidenced based care, including patients and carers, to discuss how to raise awareness and improve access to trials and studies.

5. How could an informed and knowledgeable patient community help you achieve the changes you require to help evidenced based commissioning of services become a reality?
Note: You could use some of these activities to help people understand commissioning. Building Research Partnerships provides an introduction to research - The Critical Skills Appraisal Programme (CASP) develops their ability to contribute.

6. How could patient communities help you inform the public about research opportunities?

What essential skill do you think people might need to help you?

Note: You could get involved with the "Ok to Ask" campaign which is raising the profile of research as an integral part of the patient pathway.

And, almost finally...

7. How does evidence, based on high quality research, help inform and shape your commissioning decisions?

8. How many of your commissioning decisions have been based on evidence that has been through systematic review?

So, what questions would you ask and what advice would you offer?