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.

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.

Click here if you want to know more about the policy and practice of involving patients and the public 

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 

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.

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...

“...to 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

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 

Good blog about Seeking Support on @NIHR_DC website 

Carers of People with Dementia - Evidence of Interventions by @sarahchapman30 

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

Using Forum Theatre - workshop plans

Some thought on using forum theatre with Admiral Nurses for the Join Dementia Research campaign.

“To become a patient was to relinquish oneself, to be received into a system which, however benign, subtly robbed one of initiative, almost of will.”

P D James

The following notes provide an outline of possible scenes and approaches for a workshop with Admiral Nurses.

Our KEY Question:

  

How might we develop the opportunities to talk about research

as part of our interactions with patient/carers?

The opportunities are:

·      To raise the topic of research

·      To build awareness of the Join Dementia Research campaign

·      To signpost to current open studies or evidence

The issues we might explore:

·      Research as guinea pigs; as something done at end of life; as too complicated
·      Concerns about health data, Industry, initiatives such as DeepMind
·      Tapping into people’s atruism, giving and hope
·      Carers’ worry about consent on behalf of patient
·      Research burden of additional tests
·      Digital - Social media, online support and apps
·      People’s support for research
·      Desire to use evidence to improve care

Workshop Format

We will begin with an agreement that we are using forum theatre as a means of exploring the issues around dementia and research. We will assure people that everyone is safe, that they can just observe and have right to say no. We will ask that they are willing to imagine that these events are happening as real and suspend their disbelief. We will begin on a lighter note.

1. Just After Diagnosis - We explain that one of us will take on the role of a patient (holding some leaflets about a research study) and that people will have the opportunity to ask some questions (person-in-role)

We will start by asking a few questions about where the action is taking place – home/hospital/care home/clinic; describing the room (building belief). The person-in-role begins to talk. It is almost as if we are hearing their thoughts.

“The nurse has just given me this. Emmm, what did they call it – a study, a trial? I don’t really understand it all. Seemed a really nice person…I’d like to help. Early onset, that’s what the doctor said…”

We freeze the action at this point and invite people to reflect on what they have heard then begin to ask the patient question to help find out more. (Hot Seating) After a few minutes where we may freeze the action again, we will move on to the carer

2. Conversation with a Carer – another chair is added to the side but slightly further back behind the patient’s chair.

In pairs - what is carer thinking at this point? We invite a participant to sit in the chair as we hear

3. Talking about Research - Two chairs are set out, almost facing each other.

In pairs, small groups: How have you approached the topic of research? What words or phrases have worked well?

We can do this in a number of ways depending on whether the participants are relaxed and involved.

The safe way will be for us to take on the roles of ‘patient’ and ‘nurse’

The more adventurous way will be for the participants to take on the roles

A third way is to give each of the roles a team of supporters who can help shape the language.

 We will assume that the pleasantries and procedures have taken place. No 'would you like a cup of tea so that we go straight to the point where we talk about research.

We will use a variety of drama conventions to allow us to run and re-run the conversation; to go forward and back in time; to challenge some opinions and test out what might work.

Question for group. Where does the conversation begin? Who mainly initiates the conversation about research? Are more patients/carers asking? Are the questions changing? (See Asking Thinking Questions)

4. Why do we do this…(factual referencing)

·      Research active Hospitals = better outcomes

·      Research is a positive experience = better quality

·      Most research compares standard treatment with an addition

·      Research Nurses reckon that research makes them better at care

·      Research seeks to improve diagnosis, treatment, care and services

5. A Photograph (Still Image)

Participants are asked to create a moment in time when the Nurse and patient are having a conversation. As each group shows their image the others are asked to pride a caption

6. If ­­­­­­­­­­­­xxxxxxxx (replace with Apple Computers, Hilton Hotels, Thomas Cook, Amazon) delivered research… what would the experience sound and feel like for the participants?

7. Marking the Moment – To end the session, we will invite participants to walk past our patient chair as if it is ten years from now.

       What might we be able to say to the patient and/or carer?

To finish: We will remind people that we were using forum theatre a learning medium and that we are out of role. We will thank them for participating and invite some out-of-role reflection.

Other Notes

What symbolic objects might be helpful?

Text about Dr's appointment

Hospital letter

MRI scanner image

Patient Record

Memory Clinic

Charity contact

Who are the people we may want to bring into the drama?

Patient

Carer

Family

Researchers

Nurses

Specialist Nurses

Allied Health Professionals

Doctors

Consultants

Care staff

Care Home

Charities

Media - print, TV/radio, online, social

Government

CCGs, Trusts and other providers

What Information and resources about JDR would we want the Admiral Nurses to know?

Website

Numbers

Impact

Some background reading

False Hopes article

Dr. Alzheimer and the patient who helped reveal a devastating disease

Kate Swaffer’s blog

Wendy Mitchell’s blog

Deep UK @DementiaVoices

Even healthcare professionals find it difficult being a patient:

“Why was I so authoritative in a surgeon's coat but so meek in a patient's gown.”

Paul Kalanathi - When Breath Becomes Air