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 

Friday, 11 August 2017

Being Effective Top Ten #1: Starting with Ourselves

These were some of the points I made in my talk to Katie'sTeam @kt_network

My Top Ten hints for effective #publicinvolvement #inresearch

1. Our experience and insights are the balance to the researcher's knowledge 

2. Our understanding is of equal value to the researcher's experience 

3. Be confident and assured even when we don't feel it inside

4. Believe in our right to be involved and that it is right that we are part of the dialogue 

5. Remember that much of research is publicly funded by donation, taxation, legacy or activities designed to raise cash - it is our research

6. Check out what is required and expected of us and be clear about our requirements and expectations in return

7. Speak up and out about the issues that are important and inquire whether it is the appropriate place to raise them

8. Always ask what is going to done about issues we raise, who will do it, when will it be done and how will we know it has been done

9. Write a 'diary' of reflections on what we are learning as we soon forget what we didn't know

10. Keep going even when we feel it is taking too long - it is actually changing for the better*

Q. What are your Top Ten hints? 

*Some of the improvements I have witnessed include....

  • More people are given the opportunity to take part in research 
  • Research is taking less time to get set up, recruit and meet the target number of participants 
  • Research is happening in more clinics, GPs and in care homes
  • Patient Information Sheets are much improved in terms of content, language and explanation
  • More studies are adapting as results start to show
  • Patient Experience surveys are showing how people like taking part
  • Public involvement is more widespread and becoming a sharper instrument of change and improvement 

The experience, voice and presence of both patients and the public have been vital catalysts for change in achieving all of this. 

Is it sufficient? Is it happening quick enough? Quite frankly - NO but it is important that we recognise the progress that has been made and keep up the pressure.

Thursday, 10 August 2017

I want to be in Katie's Team

Today, I have the pleasure of speaking with Katie's Team at the meeting of the East London Women's Health group at the Brady Arts Centre

Secretly, I want to be part of Katie's Team. I hope, at least, I might be considered after my talk to be seen as a supporter and a friend. 

The reason behind my wish is quite straightforward. 

Katie's Team as a title is so much better than something like the Patient Partnership Group for Research.

Katie sounds as if I am going to meet people. Being in a Team implies that we will be working as one. Katie's Team sounds like a cool group (oops, think I just showed my age there!). Katie's Team sounds like there is a plan.

Katie actually stands for Katherine Twining and for KT: Knowledge Transfer. I am not sure which but hey, that seems okay. It makes me feel that we will be exchanging ideas, experiences and information with people who care. You can read here about Katie's Team

As their website states...

“Katie’s Team” is the KT Network patient and public advisory group. It consists of mums and local members of the public who have a connection to our research areas of childbirth, pregnancy and reproductive issues."

A number of staff in the KT Network staff have attended workshop run by Bec Hanley and I with the UCL Biomedical Research Centre.  

Katie’s Team is another fine example of setting a good standard by describing purpose...

“ ensure that women’s health research is done effectively and remains relevant to the needs of local mothers. That’s because women who have experienced pregnancy and childbirth issues have unique insight that is valuable to the researchers. 

‘Katie’s Team’ members also act as champions for research within their own communities.”

These brief statements state precisely why the group exists, who it involves and equally important it explains this in a way which makes me interested, keen and willing to help. 

They have a clear intent, the context is outlined, the requirements stated and they regularly review and post their achievements. 

Our primary role, as patients and the public, in research is crystallised in these extracted phrases:  “to make sure that the research is done effectively” and that it “remains relevant to to the needs of local mothers”. For 'local mothers' read local respiratory patient, mental heath service users, carers, etc.

Effective, relevant research should always be our cry.

I am reminded of a wonderful quote that “It is better to measure imprecisely that which is relevant, than to measure precisely that which is irrelevant” from Stephen Evans, medical statistician in an article written by the wonderful Iain Chalmers in the BMJ 310 May 1995.

An early example of women initiating the debate was recorded in a 1976 article on obstetric practice by  Iain Chalmers (1). The Oxford Consumer Group had reported that the public made more adverse comments about maternity services than any other branch of the NHS. It is perhaps the first record of patient involvement in research.

Women's Health is one of the most important issues worldwide as defined in this World Health Organisation report. The fact that Women in health and medicine often goes unreported in history means we need to champion their work. Equally, we need to consider research into women's health priorities and interventions.

These are just some of the reasons I was keen to attend the day and meet members of Katie's Team. I want to learn more about what they do.

You can find out much more about the actual research the @kt_network are doing here.

 1. Chalmers I. British debate on obstetric practice. Pediatrics 1976; 58:308-312

Sunday, 6 August 2017

Let's Talk About Research

More and more people are being offered the opportunity to help answer questions that could make a difference to our health and wellbeing. But, what if you don't know about research?

The word RESEARCH may often sound rather grand yet it is, straightforwardly, about asking a question in a search for some answers. 

Beginning a conversation about research is a important stage in helping people understand about what it entails. Ideally this would take place long before we recruit people to such studies. 

This can be challenging especially when people are still coming to terms with the diagnosis of an illness. This is as true for dementia as it is for other conditions. 

Let's Talk about Research was the title we gave our workshop when Join Dementia Research* were invited to work with Admiral Nurses at their Professional Development Day in Coventry. 

We decide to use drama as a means of exploring some of the issues. We wanted to learn as much from the nurses but we were keen to avoid a 'script'.

We agreed some basic rules for this forum theatre...
  • people being safe
  • able to just observe 
  • choose when to interact
  • willing to believe 
A colleague Jo Burns took on the role of a person recently diagnosed with dementia. The group offered a name for the patient and then described the house. 

As soon as Jo began there was an immediacy. It was as if we were all present in the patient's house. We were engaged in both thinking and feeling. The patient began to talk...

After hearing a few statements and thoughts, the group asked the patient some questions. Each of these stages helped build belief and provided information before beginning to discuss research. We had to know more about each other if research has to play its part.

We were inviting the Admiral Nurse to enter a conversation. 

We were exploring the needs of the patient and their carer so that they could adapt the discussion appropriately. 

We weren't talking, here, about individual research studies. 

We were using forum theatre to create the story together to test out various different approaches to talking about research.

We also demonstrated how we might upload information to our phones to about How to Get Involved in Dementia Research and hear about How People Engage with Dementia Research  

The Admiral Nurses, we met, are clearly a group of highly professional, dedicated and passionate individuals….committed to supporting families living with dementia… Thank you.

We benefitted from listening to their knowledge and the way they thought research should be discussed. 

You can find your Local Admiral Nurses Team here.

I think we learned about...
  • Relationships - speaking about research helps if you know the patients
  • Circumstances - everybody is different and we should never make assumptions 
  • Timing - is all when discussing research
  • Choice - talking is about giving people the opportunity to ask questions before making a decision
  • Information - is required in different formats
Hopefully, we helped Admiral Nurses to access resources, to gain knowledge and build confidence in talking about research. 

Finally, a thank you to the NIHR Clinical Research Network team at Minerva House, London who helped shape our thinking and to Andrew Rutherford for taking on one of the roles.

Here are some further resources you may find interesting:

Which Me Am I Today - Blog by @WendyPMitchell 

Social living models for people with dementia - from @EcpdCarolyn 

Where Next for Care Home Research - Article by @KristinaStaley2 

....or how about taking part in this study or this online survey from Nottingham.

* Join Dementia Research is funded by the Department of Health and delivered in partnership with the National Institute for Health Research, Alzheimer Scotland, Alzheimer's Research UK

and Alzheimer's Society

If you are on Twitter then have a look at #myresearchlearning.

You can also read more about how we planned the work in the following post and more about Using Forum Theatre