Issue 11: September 2018 – Involving patients and carers in QI projects

Published on: Thursday 27th September 2018

Launching our toolkit on involving patients and carers in QI projects 

The scorching summer has (at least so far) been replaced by a not-half-bad autumn.  This month QI in CNWL has gathered momentum; we had a stall at this year’s AGM, a sizeable QI Learning Event, piloting of bespoke QI training delivered by and for patients and carers, completion of a toolkit on how to involve patients and carers in QI projects, and finally a virtual workshop ‘attended’ by 30 fortunate staff members selected for the Improvement Coach Development Programme. They will then have face-to-face training on 26 to 28 September. Phew- what a month!     

This month’s edition offers the toolkit on involving patients and carers in QI projects. The toolkit has been co-produced by CNWL patients, carers, and staff and is one of a number of outputs from CNWL’s ‘Increasing Service User and Carer involvement in QI projects’ QI project. Thank you to the many people who have contributed to its development.  Please let us know what you think of it. The toolkit has also been uploaded to the QI Microsite and is available here

Before we launch into the toolkit, here’s an update on numbers of live projects on Life QI and completed IHI Open School courses. 

  • We now have 230 active projects on Life QI
  • 618 staff have now registered on Life QI 
  • 284 staff have registered for training on IHI Open SchooI 
  • Over 450 IHI Open School training modules have been completed  

You can see here that more of you have joined our community online.


    • 259 staff have registered on IHI Open School
    • 45 IHI open School courses are completed each month on average.

Autumn Learning Event 14 September: All Teach All Learn   

Thank you to everyone who organised, attended, presented at and/or delivered masterclasses at this packed and energetic event. Feedback from the 60 or so delegates after the event suggests that our Medical Director Dr Con Kelly’s advice at the start of the day to “have fun everybody” was taken to heart by those who attended. 

Improvement Coach Development Programme 

We wish the 30 CNWL staff that have been selected for development as Improvement Coaches all the very best. These individuals will attend six face-to-face days of training from 25 to 28 September and 3 to 5 December and will be assigned to support existing QI projects, initially as trainee QI coaches. QI coaches will in future play a significant part throughout CNWL in supporting QI project teams.       

Life QI: Tip of the month: Annotating your measures

Annotating your measures

In QI projects we use data over time to tell the story of our improvement journey. You can annotate your data in Life QI so that anyone glancing at your data can understand your QI journey.

To annotate your chart

1.    Navigate to “Measures and Charts” on Life QI. This is on the menu on the left hand side.
2.    Click on your measure to open it
3.    Click “View chart & data”
4.    Click “edit”
5.    Click on a data point you would like to annotate
6.    You can then type into the note field and link to a PDSA (if your note relates to a specific PDSA)
7.    Be sure to save your chart to save your annotation


Involving Patients and Carers in Quality Improvement Projects: A Practical Guide

We have created a Practical Toolkit for Service User and Carer Involvement in QI. This includes a lot of practical information on the following topics. This abridged version of the toolkit explains how to involve patients and carers in Quality Improvement (QI) projects. A complete version with appendices is available on the QI microsite.

We’re happy to advise on any aspect of patient and carer involvement. Please contact Lucy Palmer, Head of Patient and Carer Involvement on 020 8637 6195, or email


1. Decide how you want to involve patients or carers 

Think about what you need the person for and when you need them.  It’s important to have a clear purpose and need from the start. Patients and carers can be involved in many activities and on many different levels.   

Think about how many patients and carers you need. 
It’s good practice to involve more than one person so they’re not a lone voice in meetings and so if one person can’t attend, you still have a user voice.  For focus groups, six to10 patients and carers can work well.

Adapt the template role description, person specification and application form at the back of this guide to fit your project. This is designed for people who you plan to recruit to your QI project team and includes the skills or experience required. It also includes details of i) the work involved, ii) expenses and payment offered and iii) where known, details of venues, timings, frequency of meetings and the time limit of the role.   

2. Recruit patients and carers

Decide how to recruit the person

For ad-hoc, time limited tasks where a particular skill or experience is required, you might choose to invite a patient or carer you already know. If so, discuss the role description with them, allow time for questions and check you’re both happy it’s a good fit.  

For any substantial posts, its good practice to open it out to others, giving more people the chance to get involved and helping you hear fresh perspectives.  Either way, choose someone who understands the problem you’re trying to solve and has the right skills for the job – not just anyone who happens to be a patient or carer. 

If advertising your post, you can use the template advert at the back of the guide to promote it through your local service, charities, community or patient and carer groups. Consider the diversity of your patient and carer colleagues and whether there are groups your project would really benefit from involving. If so, there’s likely to be a group or network that can help.

Once people have applied for the role, shortlist and agree a time for a short, informal interview on the phone or face to face, using the example questions provided. Also consider asking a patient or carer to join you on the interview panel, especially if you’re interviewing several people in a competitive process. This adds a valuable viewpoint and can help make the interviewees feel more at ease. After the interviews, let people know how soon they can expect to hear from you. If any unsuccessful candidates ask for feedback, provide this in a sensitive and constructive manner.

3. Provide an induction and agree ways of working  

One of the most common reasons that user involvement doesn’t reach its potential is a lack of information given to patients or carers from the start. By providing a strong induction, you’ll equip people with the knowledge to make a real impact, meaning greater satisfaction for them and for you. 

Choose someone to be a named, consistent link person: someone from the QI project that the patient and carers will have contact with throughout, to answer questions, provide support, information and advice. Choose someone with strong communication skills and the ability to foster positive relationships. 

Agree a time to induct the patient or carers – someone from the QI project should provide this using a checklist and handbook which is available on the QI microsite.

4. Run inclusive and effective meetings 

Establish an open, positive and inclusive culture so that everyone feels genuinely involved and included. Many people find meetings difficult to participate in on an equal basis so a good facilitator is needed to make sure all voices are heard. QI project work should be engaging, fun and not overly formal. Consider an ice breaker exercise and some time spent agreeing ground rules for the group. Templates for both can be found at the back of this guide. 

Understand people’s motivation for joining in. Many patients and carers joining a QI group are doing so because the topic is something close to their heart. They may have had an experience of a health service (good or bad) that makes them highly committed to the cause. This energy and insight can have a hugely positive impact. At the same time, people’s stories are important to them and if they need time at the beginning of the QI process to talk about this, please allow it. 

Acknowledge the different expertise in the group and make it clear that all views are equally valid. Staff have expertise in their area; patients and carers are experts in their own lives and health. And of course many of us have experience of having dual roles, where we can relate to being service users, carers or ‘professionals’ at the same time. 

Get to know your patient and carer colleagues and find out what they can bring to the group. Don’t assume they are only there to give a patient or carer perspective- everyone has many skills and experiences to bring to a group. People can also develop skills on the job, such as giving presentations, analysing data and writing reports or papers. 

Be prepared to be challenged. You’re involving people because you want to improve services.  As colleagues in East London pointed out – “When someone challenges us, we welcome it. It’s an opportunity. We don’t pretend everything is fine. This work is about a culture change. It is about listening. It is about being challenged and accepting that challenge. If you don’t welcome honest, constructive feedback, I would really question how you can deliver a quality health service”. – Paul Binfield, Head of People Participation, East London Foundation Trust.

Be prepared to work differently. Involving patients and carers can take a bit more time initially but when done well, the rewards more than make up for it. 

There are some practical steps you can take to help people participate fully in the unabridged version on the QI Microsite.  

5. Tackling difficulties 

When staff take the time to induct, inform and involve carers and patients, things are likely to run smoothly. If difficulties and challenges do arise from time to time, There are tips on how to manage these on the unabridged version on the QI Microsite.  

If you need further advice, please get in touch with us. 

6. Reimbursing expenses and session fees  

The CNWL rate for patient and carer involvement is £10 per hour and session fees should be offered to all patients and carers involved in QI activities, except for service user or carers who are taking part in an activity as a governor. The payment policy and reimbursement form can found overleaf. The funds will come from your budget. 

7. Capturing the impact of involvement 

Ideally, you should think at the beginning of the project about what impact you want patients and carers to have on the project and record how this is going by: 

1. Briefly logging in your minutes or action list who suggested what, or who took on what tasks throughout the project (this can be done by patients, carers or staff)

2. Asking carers, patients and staff questions like:

  • What were the intended outcome of involvement and which ones were met? 
  • What actual difference has involvement made to the project, activity or organisation? 
  • What were the challenges of involvement and what can we learn from this?  
  • Did the involvement of patients and carers result in any unexpected consequences, good or bad? What impact has it had on people’s knowledge, wellbeing, or skill set? 
  • What would we have missed if we hadn’t involved patients and carers in the QI project?
  • To what extent did patients and carers feel an equal member of the QI team?  
  • What would we do differently next time? 

This can be discussed as a team, or with individuals or through a survey. Please share learning within your team and the patient and carer involvement team at Trust HQ. 

Help and support

Key contacts for help and support or for more information about running your Quality Improvement projects:

Dr Simon Edwards (
Trust wide Clinical Lead for Quality Improvement 
and Diggory Divisional QI Lead

Margo Fallon (
Goodall Divisional QI Lead

Dr Tresa Andrews (
Jameson Divisional QI Lead

Alison Butler (
Trustwide QI Programme Lead

Bridget Browne (
QI Programme Manager

Marcus Maguire (
Programme Manager

Useful links


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