Thursday, 7 December 2017

Making Sense of Involvement

The following notes formed the basis of a workshop for the Homerton Simulation Conference 2017 #HomSim

At first glance it might appear to be difficult to actively involve patients in Technology, Medical Devices, Translational Science, Surgical Procedures yet the added value of patient insight from personal experience can be helpful, innovative and transformational.

For many years, I have offered my perspective on individual research studies, on the conduct and management of trials, on the governance and policies for research in the UK and beyond. I have contributed to helping more people take part, to improving access, time and targets by which research studies are rolled out in the NHS.

I have also gained knowledge and a much broader understanding of my illness, the challenges of undertaking research and the importance of research as part of the patient pathway. I now see my active involvement as a direct influence on my own health and wellbeing. 

I simply ask that you see patient experience, the patient voice and our presence as a valuable resource and a willing partnership to enrich research and improve people’s health outcomes. It is about thinking where we might add value.

So here are my Top Ten tips for the workshop

  1. Start from where you are with your own work - to make Patient & Public Involvement make sense.
  2. Align the Involvement of patients to your project: Choose a point e.g. in the early thinking, design, proposal application or for recruitment, etc.
  3. Think about the patients: Why and how might their experience, voices and presence make a difference?
  4. Make the involvement appropriate and proportional - to the need, task, time and funding
  5. Decide on the format: Do you want a sounding board, a buddy, partners, a discussion group, co-applicants? 
  6. What is needed for the task: Think of each other’s needs and always pay out of pocket expenses
  7. Find the relevant people: Are they current patients, past patients, carers, patient representatives, public?
  8. Review regularly together with patients: Use a Plan, Do, Study, Act approach.
  9. Keep in contact: provide regular updates and feedback even when little has happened.
  10. Write it up: Mention the IMPACT of the involvement on posters, presentations and publications. Thank everyone!

In the workshop, I invited people to work in small groups to consider different points in a research idea through its development.

Thursday, 16 November 2017

Finders, Keepers - how to find people for research involvement and keep us interested

These notes are for a #BecandDerek workshop, Finders, Keepers, at Barts for Queen Mary's University London

FINDING PEOPLE - who might want to help enrich research 

Many health researchers have patients or service users. They are well placed to put up a poster or ask people to help. 

One clinician said to us that she sat down and thought about the different places her patients went for tests, checks and appointments and targeted those with leaflets and posters explaining what she wanted and why.

Most GPs have Patient Participation Groups and you will find local contacts - e.g. Camden in London

Many health communities are using Social Media to reach out and show how they are trying to work together. Here is an example for Tower Hamlets

You might want to talk to those who work in the Voluntary Sector. Here is another from Tower Hamlets  and a couple from Camden Voluntary Action and a Volunteer Action Centre 

The closer to the community the more likely you are to find real people. 

However, you may need to look nationally to find the local contacts. You can find a local Healthwatch here.

If you are looking for Self-Help or Support Group search using Self Help UK 


Charities who help with health research can be a good starting point. Many of them work together and you can most most who are leading on patient involvement are part of the Shared Learning Group  Please use the link only to check if a charity is doing something then contact the charity directly as the group doesn't have the resource to deal with individual enquiries.


University College London have produced the  excellent UCL Culture and UCL Partners Guide to working with Voluntary Sector 

East Midlands Academic Health Science Network (AHSN) have an excellent guide Engaging the Seldom Heard 

You may also want to check out the Centre for BME Health, Leicester 


It would be remiss of me not to mention some of my personal favourites in this area.

The wonderful Katie's Team - you can read my earlier post - here.

...and the wonderful Genes and Health East London - previous blog post - here.

And a shout out for @drtomround working in East London who I met again yesterday so you may also want to check out Tower Hamlets CCG

Thank you - @olivia_research @Rohima_Research and @Neeta_Patel1 - always good to work with you.

AS FOR KEEPERS - just watch this space as our participants will be adding their thoughts and advice

Thursday, 9 November 2017

Pragmatic, Personal Insight

I was invited to talk with @NIHRCRN_wessex about how we make involving people simpler and more practical.

We have got much better at involving patients and the public at an earlier stage of designing studies. But how might patients, carers and the public get involved with the delivery of that research.

Thinking about how patients might help us with the delivery of research is in everybody’s interest and everyone’s responsibility. Thinking about how we advise, support and empower people is the role of each of us working in patient and public involvement.

Our task is relatively simple: 

We want it to be easier for people to find out about, take part and get involved in research and know that the experience of doing so is valued.

The pragmatic question for us

Where do we need and want patient experience, the patient voice and the presence of patients/the public to make a difference?

Where might that voice best add value to the delivery of research: 

Awareness, Information, Access, Communication, Recruitment and Retention, Feedback.

Our desire is that all participants are thanked for taking part, receive a lay summary of the outcome and are able to access the full results.

So, what roles are there for patients in the delivery of research:

PATIENT EXPERIENCE (as participants)
  • How is information being use for quality assurance and improvement?
  • What data is already collected (such as Friends and Family) and could research form part of it?
  • How might we use technology better to gather such information?

  • Taking part in Surveys
  • Helping review communications materials by email
  • Reviewing results of patient experience survey
  • Stories for use at meetings

  • Ambassadors - speaking to local groups
  • Hearts and minds - talks to staff
  • Sounding board - Advice about doubtful studies
  • Walk throughs
  • Reflecting on less successful studies
Note: The people we want to hear from may be different and have different skills

  • Team work in CRN and across NIHR, NHS, Univ and CCGs
  • Agreeing certain priorities 
  • Start with a clear purpose 
  • Share tasks
  • Lean on each other but come up with goods
  • Adopt a project by project approach with agreed deadlines
  • Choose one big project with two or three smaller and medium term tasks
  • Set out with Impact in mind - capture, count and circulate
  • Leadership - use a partnership model

Our job in Patient, Public Involvement and Engagement is to offer:
  • Support to enable patient advocates to improve our work
  • Knowledge about Improving Healthcare through Research - the MOOC
  • Information about support that is available - Learnzone; PRAI 

Reciprocal Benefits
  • Greater knowledge about our illness/condition
  • Understanding about current and recent research
  • Finding out about how research takes place, the different methods and the time it can take
  • Learning about the efforts to improve research through patient involvement
  • Realising the way NIHR is transforming the culture and infrastructure
  • Helping shape the future including the use of technology to enhance the experience

We have stories to tell that are valuable to patients, public and teams.
Start telling these stories with a passion

Other Sources

You might like to look at these examples of the good work that is going in Wessex...

Wessex AHSN Co-production

Thursday, 28 September 2017

What should a Strategy for Involving Local People in Research look like?

One of the first things that strikes me about many Policies, Strategies and Plans for Engaging and Involving patients, service users, carers and the public is that they sit apart from the purpose of the organisation where they exist. The second feature is that they often just concentrate on the processes of patient and public involvement rather then its purpose to make research better - more relevant and appropriate, more accessible, quicker and easier to understand. The third feature is that they stop at research rather than connecting it to improving health and wellbeing. Fourthly, they lack measures to assess the added value patient and public insight brings.

The following framework is being developed by the NIHR Nottingham Biomedical Research Centre (BRC) as means of setting out the different elements for our Strategy. 

Producing a Strategy - Here are some of the questions we are asking.

What is the ambition? (AIM & PURPOSE) - Involving and engaging patients and the public is the means of achieving the ambitions . Involvement is an enabler, a vehicle that provides unique insight to help deliver high quality research to improve future health.
We are talking to people to help set out how the involvement of patients and the public will contribute to the work of the BRC and local people's lives. These discussions will shape our ambition and help make it happen.

About Our BRC (CONTEXT) BRCs provide a vital link between the health services and local patient need that may be different across the country. The way patients and public are already involved will have a bearing on our direction of travel.
We want to briefly tell the local story and mark our starting point as building on good practice

What is the Strategy? (SCOPE) Involvement, Engagement and Participation
We will set out how these are related and reflected throughout our plans and practice

How is it being developed? (PROCESS) We will ensure that we hold the values of involvement and have a process for engaging and involving patients, public and partners
We will report on how we have consulted and made changes to our thinking and to the report

How does it meet with national and local Policies and Reports? (ALIGNMENT) We need to use these reports for references on the wider picture.
We will do a speedy review of relevant documents to check for areas in commonality and difference to show how involving people fits together with other reports

How are we working together? (COORDINATION) BRCs can play vital role in hosting meetings, encouraging partnership working,
We will explain how we are supporting the development of One NIHR at a local and regional level.

Where are we now and in future? (ANALYSIS) We will carry out a simple Strengths, Weaknesses, Opportunities & Threats (SWOT) activity
We will base our Strategy on a thorough understanding of where and how patients and the public are currently engaged / involved and where we are heading

How will we know we have made a difference? (REVIEW) Capturing the story, counting some numbers and circulating it with others will help us measure the impact 

We will explain how we will test out various ways acknowledging, celebrating and illustrating the ways in which patients, public and partners have changed and improved the BRC

We would welcome feedback so that this is developed in partnership with as many people as possible - please contact 

Tweet #publicinvolvement @DerekCStewart

Derek Stewart is the Interim Director for Patient Involvement at Nottingham BRC


Wednesday, 13 September 2017

Being Effective #5 Influencing Research and making friends

Being Effective #5 - Influencing Research (and Making Friends)
Produced by John Reeve and Derek Stewart with further rich contributions from Roger Wilson, Jacqui Gath, Kathy Oliver, John Lancaster, Victoria Nnatuanya - members of the NCRI Consumer Forum - Thank you!

Our main function is often to inform the researcher but we also have a responsibility to influence research now and for the future. This may be about the type of research that is carried out, the range of research, the use of technology, etc.

So, how have many of these cancer patients made their voices heard so powerfully in research policy and practice. Here is the latest Top Ten:  

1. Get to know people - we are human beings first rather than either patient & researchers. It is a relationship.

2. Ask about each other’s life’s away from health and research* 

3. Have a genuine interest in the research that is being done

4. Enquire about the challenges and issues faced in this research

5. Seek out one or two ‘quick wins’ that together could be achieved

6. Focus on where the patient input could add most value 

7. Once accomplished, or when nearly there, begin the bigger task

8. Identify and define the actual problem (e.g. is it to do with practice, systems or policy)

9. Make a plan that you can explain and people understand 

10 Finally, Just Do it! 

And a DON'TIf you’re trying to influence an individual or a room full of people and what you’re doing isn’t working, STOP. Try something different. Repeating our message or saying it louder invariably makes things worse.

* This provoked an email dialogue which touched on examples including the merits of the Playstation, black pudding, musical inabilities, travel, children, holidays and fund raising concerts. (These are clearly the meetings I should have attended)

John Reeve added the following contribution to our email chatter which I thought was worth adding here. It is that valuable reminder that we as patients bring a host of other experiences and knowledge to the table.

Many years ago I came across the Trust Equation - the core of relationships

T=( C+R+I)/SO

Where T= Trust: C=  credibility - a first impressions judgement we make of each other all the time; R= reliability - takes time to build. You can have a solid working relationship based on mutual C+R. The thing that takes a solid relationship and transforms it into a strong, influential and enduring one is I= Intimacy. An interest and investment in each other as people - a shared interest or hobby that builds a strong connection.

It reminds me also of the denominator in the equation - SO - which can destroy all this good work. Self Orientation - playing games or having another agenda destroys trust.

We should never underestimate as patient advocates, the influence we hold based on our open, transparent and passionate support of patients and the patient voice. Often we bring this to bear at a critical moment when other agendas may be swaying an important decision and help find consensus and shared accountability.

Tuesday, 29 August 2017

Being Effective Top Ten #4: Involving more than just me!

This is #4 in a series of posts to encourage learning and personal development for patient advocates who are effecting change in all aspects of health and social care research. You can read the previous post here.

All too often a patient is asked by a researcher to comment on different aspects of a study. We are pleased to be asked. We are happy to offer our opinion based on our experience. We are keen to know that our input made a difference.

But ‘involvement’ is not just about providing easy answers. It is about asking questions of the researcher.

1. Who with the condition have you spoken to about your research?

2. Have you looked into any related support groups, online communities or charities?

3. Are there particular problems for this condition with specific groups, communities or cultures?

GENTLE ADVICE: Go back to No1 and start again!

4. How relevant is your research to the issues the patients raised?

5. How have you altered your research since having those conversations?

6. What plans do you have to involve different patients/public in the planning and design stage of the study?

7. What ideas do you have for maintaining a relationship with those who have helped you in the delivery and dissemination stages?

8. Have you thought about ways of thanking the participants and those who helped?

9. How are you to tell those who took part about the results of the study?

10 How are you thinking about recording and reporting the impact of the patient/public involvement?

The questions, I have chosen, are aimed at offering to help researchers actually ‘get it’ - to make that total shift in their thinking and practice rather than possibly letting them off the hook. However, if you know the researcher well and they do get it, then giving advice is fine.

Involvement is as much about taking researchers on a journey. It is about taking research into communities. It is about a researcher feeling confident to talk with ordinary patients, carers and their families. It is about moving towards a more patient relevant culture. 

For many of us who are experienced patient advocates, we need to see ourselves as 'educationalists' - leading people to their own understanding; as 'knowledge brokers' with expertise who can help guide others, as 'skilled practitioners' in the different ways of involving people in a meaningful manner.

The thinking expressed here may be directly challenging to a number of people. It will question much of what is done yet I trust it will be seen as constructive challenge. I hope that it will help progress this movement which is as much about cultural change as it is about helping an individual researcher.

Monday, 21 August 2017

Being Effective #3 - Developing as a Patient Advocate

You can find more Top 10s: 
Why you are Involved here and The Purpose of Involvement here

These are just some of the characteristics that I have noticed in patient advocates who seem to be making a real difference. It was difficult to choose my Ten but do please let me know of others. 

@PeopleHealthWE suggests that these are about becoming Agents for Change. I agree!

1. Putting our story* aside. Our task is to help with a specific task rather than just recounting our experience (if the task is not clear - then make it so)

2. Asking when you don't know and asking again if it is not clear (a post-it note to person next to you works well) 

3. Helping to find solutions rather than listing the problems (making us part of the team)

4. Listening carefully to the discussion and think about where our experience could add value (this helps our contribution to be relevant and supportive)

5. Being an advocate for those who are not in the room and who sometimes can't have a say (by speak up we help give others a voice)

6. Helping researchers to get others involved rather than be the sole patient representative (helping the researchers learn rather than giving them an easy answer)

7. Bringing up the needs and value of caregivers, family and friends (helping turn bystanders into valuable resources)

8. Encouraging greater diversity and addressing health inequalities (needing to improve everyone's health and wellbeing)

9. Drawing upon wider life experiences to interpret and offer ideas and answers (providing a different perspective for a better understanding)

10. Thinking about how you might use the info you have learned e.g. Speaking at a support group, informing friends, etc. (learning is best when it is shared with others)

and another from @kareninns1 

10a. Reflecting on the difference you are making/have made to the research for the benefit of others (sharing impact with real world examples) 

* We will all tell our 'story'. It is often what brought us into the room. The events will touch people and it may bring tears to the eyes. Our story from diagnosis through treatment comes with a passion to help make things better - it is this drive that we need to use with effect. 

The telling of our story has a 'time' and a 'place'. The choice of certain moments makes us more effective and more likely to be listened to with respect. 

When we are working with researchers we do need to explain what brings us to the table. We need to listen to the discussion and be very selective in using the right moment from what happened to us to help make it real for others. 

This is what will lead to change.

Tuesday, 15 August 2017

Being Effective - Top Ten #2: Being Clear About the Purpose

Being Effective - Top Ten #2: Being Clear About the Purpose
You can read Top Ten #1 here

Here are 10 Questions I think that we should expect to hear described by the researcher and/or the team about the research that is intended. 

1. What type of research is going to be done?

2. What is the need?

3. What are the current options for treatment?

4. What are the challenges faced by patients?

5. What research has been done already? 

6. What is different about this study?

7. Why is it important to you and this work?

8. What improvements do you hope to see?

9. How long will all of this take?

Finally, one for us as members of the public : 

10 Am I now able to describe this back to the researcher, to patients and others?

Once we have this information, we are in a much better place to think about how our experience can add value. 

  • What insights can we gained?
  • What perspectives can we give?
  • What do we know that is different?
  • What other skills can we offer?

Equally, researchers may wish to turn these questions to make them apply to your own study. 

Thanks to @rheumpatient for reminder that it is not ethical to waste participants' time if no new knowledge to be gained.

This Top Ten Series fits nicely with #myresearchlearning on Twitter as it helps people develop in their own time and at their own pace. The Questions may even provoke a little thought amongst those of us