Q Exchange

Open access evidence maps

Patient experience evidence maps revealing saturation and gaps in the evidence base and showing who gets heard - and who doesn't.

Read comments 19 Project updates 1

Winning idea
2022

Meet the team

Miles Sibley

Also:

Dr. Rebecca Baines
Dr. Seb Stevens
Anthony McQuillan

What is the challenge your project is going to address and how does it connect to the theme?

In an NHS that wants to be both person-centred and evidence-based, a good understanding of patient experience is an essential driver for improvement.

Evidence on patient experience is gathered in large quantity – by government bodies, health charities, patient voice organisations, academic institutions and more. But there is so much of it that it can be hard to make sense of it all.

So the Patient Experience Library has been working with Plymouth University and the South West Academic Health Science Network to find ways to map the patient experience evidence base – helping people quickly and easily to see what is in it.

This is a digital innovation that can expose saturation and gaps in the evidence base. In particular, it can show who gets heard, and who doesn’t – vital knowledge for understanding health inequalities, and spotting areas where evidence-based improvement needs to be strengthened.

What does your project aim to achieve?

To tackle health inequalities, we have to understand them from the point of view of people whose health is damaged by inequality and who then find it harder to get the health services they need.

We cannot develop that understanding if we cannot see how people are being included or excluded from the evidence-gathering on patient experience.

A recent “proof of concept” exercise mapped 562 reports on patient experience of Covid – a huge number to try to read through individually. Our resultant evidence map instantly shows that just 7% address health inequalities, and a mere 1% look at the experiences of people who are clinically vulnerable. Additionally just two reports look specifically at the Covid experiences of Bangladeshi people, and two have a focus on experiences in the Chinese community.

Our aim is to put more of these patient experience evidence maps in the public domain, democratising the knowledge they contain.

How will the project be delivered?

The output from our proof of concept project can be seen here. The video demonstration shows that we have the skills to do this well.

The project budget was £4,000 – to cover literature searches, coding and analysis, and development of mapping techniques and visualisations. We have demonstrated excellent value for money.

Funding from the Q Exchange would enable us to map another area of the evidence base, but this time to also:

– Improve functionality, enabling greater automation and faster production of new evidence maps.

– Move beyond video demonstrations to give people direct access to the maps and enable them to manipulate and interrogate the data for themselves.

Our proof of concept worked for patient experience of Covid and patient experience of digital healthcare, so we are confident that it will work for other areas of the patient experience evidence base as well. So the risks are minimal.

How is your project going to share learning?

Online and open access evidence maps will help health professionals, patient advocates and researchers to see what is actually in the patient experience evidence base.

This will help research funders to see how to get better value for money, help researchers to see how to avoid time-wasting and duplication, and help patient advocates to see who is getting heard in patient experience evidence-gathering.

With a fully functioning evidence map (rather than an online video demo) we can go to NHS England, NIHR and NICE to show what is possible, and to make the case for further mapping and wider sharing of more aspects of the patient experience evidence base.

Ultimately, we aim to lay the foundations for better research prioritisation in patient experience – steering time and money more effectively, and helping the NHS to ensure that its promises of person-centred care are soundly evidence-based.

How you can contribute

Please visit the online demo https://www.patientlibrary.net/cgi-bin/library.cgi?page=Evidence_Maps and let us know what you think - info@patientlibrary.net
What other maps could we produce? Patient experience of health conditions (Parkinson's, autism, cancer etc)? Patient experience of services (eg maternity services, covering antenatal, labour and birth, postnatal)? Patient experience by population group (eg young people, LGBT people, refugees)?
How would you envisage using the maps, as a researcher, research funder, patient advocate, health policy person, commissioner etc?

Plan timeline

1 Jun 2022	Finalise which area(s) of the evidence base we will map.
1 Jul 2022	Finalise search strategy.
1 Aug 2022	Automate filtering and categorisation of search results .
1 Sep 2022	Complete searches and analysis. Develop visualisation functionality.
1 Oct 2022	User test visualisations.
1 Nov 2022	Refine visualisations.
1 Feb 2023	Complete project.

Project updates

13 Dec 2022

Evidence mapping: mid-project update December 2022

The aim of our project is to find ways to map the patient experience evidence base – helping people quickly and easily to see what is in it.

We hope to expose saturation and gaps in the evidence base – showing who gets heard, and who doesn’t, and spotting areas where evidence-based improvement needs to be strengthened.

Progress on our key tasks is as follows:

1. Improve functionality within our online research database (www.patientlibrary.net), enabling greater automation and faster production of new evidence maps.

We are making good progress on this, with rapid export of search results into the Excel workbooks that will form the basis for our analysis. Improved functionality includes:

– Automatic de-duplication of research documents appearing under multiple search terms

– Automatic cataloguing by title, author, date

– Automatic sorting by country and by publication type

2. Select key areas of the evidence base, suitable for further mapping.

We are working with our project partners Apollo Health Innovations on six areas of the patient experience evidence base:

– Engagement guides and toolkits

– Patient experience of the Covid pandemic

– Patient experience of digital healthcare

– Patient experience of rare diseases

– People’s experiences of selected aspects of health inequality

– Patient experience of urgent and emergency care

For each area, we are developing coding frameworks that will enable us to systematically extract key themes from the mass of reports that we hold in the Patient Experience Library. These will then feed into the mapping visualisations as per item 3 below.

3. Give people direct access to the maps and enable them to manipulate and interrogate the data for themselves.

This is our biggest challenge, and will be an iterative process, carried out as we work through the search and sort processes outlined above. We are building software code that will enable us to present our data extraction and analysis via a series of visualisations – giving people a graphic representation of the state of the evidence base in each of the six areas listed above.

As we go into the new year, we hope to be able to start publishing our visualisations, and inviting Q members to try them out!

Comments

Joanne Beckmann 21 May 2022

Great to learn about the Patient Experience Library and the plans with this idea! Would love to keep in contact about how things develop!
1. Miles Sibley 22 May 2022
  
  Thanks Joanne. If we get through, there will no doubt be lots of announcements, from both Q Exchange and ourselves. So watch this space!
Michelle Chunger 20 May 2022

Fantastic idea that I think lots of us could benefit from, I've voted :)

@chungermichelle
1. Miles Sibley 22 May 2022
  
  Thank you Michelle! There are lots of other good ideas as well, so not sure how we'll get on. I guess we'll find out soon - in the meantime, thanks for voting!
Rebecca Dyar 10 May 2022

What a fantastic project and aim. There is so much value in patient experience data, but knowing where/what to prioritise for data collection is a real challenge!

As a patient and clinician, I think it would be very useful to map the specific services that collect patient experience data already. This could highlight areas of inequality in and of itself. Do you have scope to follow this work through to see how the patient experience data is being used (i.e. QI work/changes arising from it)? Sharing this nationally could be so valuable in terms of increasing collaboration and avoiding reinventing the wheel.
1. Miles Sibley 10 May 2022
  
  Thanks Rebecca - and yes, our sense is that health inequality exists not just in different life expectancy, access to services etc - but who even gets heard (or sought out) by researchers exploring these things.
  
  The question about follow through is spot-on but I don't think we'll have the capacity within the funding we're asking for to address that. Definitely something worth thinking about though!
Gill Phillips 6 May 2022

I love the work that you do at Patient Experience Library.
People will like this podcast where Miles explains more: https://www.buzzsprout.com/1838805/10257860

Looking forward to supporting this project – and really hope you will support ours as well, as giving children and families the best start in life is also very important! https://q.health.org.uk/idea/2022/no-more-theoretical-mummy/

Here neonatal parents Nadia Leake and Rachel Collum share their lived experience stories and explain the need for #FamilyIntegratedCare: https://www.buzzsprout.com/1838805/9873558 #FICare
1. Miles Sibley 10 May 2022
  
  Thanks Gill. 100% supportive of family integrated care, so yes - that's a vote from me! "No more theoretical mummy" should be your project title!
Kevin Minier 3 Mar 2022

Hi Miles,

Are you familiar with PEP Health - the Patient Experience Platform https://www.pephealth.ai/ @Mark Lomax

And have you had access to research/reports produced through the OpenSAFELY Platform https://www.opensafely.org/ ?

Have you investigated anything regarding unpaid Carer health and wellbeing?

Kindest regards,

Kevin Minier
1. Miles Sibley 4 Mar 2022
  
  Thanks Kevin - Yes, we're aware of Open Safely and also of the PEP platform. As regards carers' health and wellbeing, we haven't done any evidence mapping on that, but we have collected plenty of materials in the Patient Experience Library - www.patientlibrary.net If you search for "carer" you'll find loads of good stuff from Carers' UK, Carers' Scotland, Healthwatch etc.
Wendy Keating 24 Feb 2022

Really love this idea and we would be really interested in getting involved in the South East region
1. Miles Sibley 25 Feb 2022
  
  Thanks Wendy - glad you like it! Do you want to drop me a line at miles@patientlibrary.net ?
Jo Scott 23 Feb 2022

Hi Miles - this is great. What sobering findings...It would be great if other members with Q Exchange project ideas relating to improving patient experience could use insights like these to help to prioritise efforts for their work. I wonder if there are some collaboration opportunities to keep an eye out for in the next few weeks...

Reading this idea also brought to mind a previous Q Exchange project (you may be familiar with already) https://q.health.org.uk/idea/2019/evidencebasedqi-putting-our-heads-together/ Andrea may have learning from the work she did that could help strengthen your idea of how this evidence could be picked up and used to inform the work of improvers?

Best of luck with this idea

Jo
1. Andrea Gibbons 10 Mar 2022
  
  Jo, thanks so much for the shout out for our project. I love the work that Miles does and am a regular user of the Patient Experience Library which I think is brilliant! Everyone should check it out. Miles and I have previously been in touch, and there is definitely the opportunity for collaboration with this project going forward. I'm on leave at the moment, but look forward to picking up with Miles on this when I get back - it's a really exciting project. Good luck with the project Miles!!
2. Miles Sibley 25 Feb 2022
  
  Thanks Jo. I remember Andrea's project - she's just down the road from me in Somerset, and I think I voted for her idea in that funding round! I'll drop her a line, as you suggest.
  
  Thanks again,
  
  Miles
Darren Wright 23 Feb 2022

I like the idea of broadening it out to show the potential in other topic areas. I think patient experience in relation to mental health services would be really interesting to look at.
1. Miles Sibley 25 Feb 2022
  
  Agree - and there's so much in there that we could cover. We did a little scoping project a few years back on young people's experiences of CAMHS services. We found that the vast majority treated young people as though they're all the same.
  
  There was very little literature on the experiences of young Black people, care leavers, young offenders etc, all of whom are known to be more at risk of mental ill-health, and likely to have poorer access to services.
  
  It would be great to map all that - again, exposing areas of saturation/duplication, and revealing the areas where research time and funding could be more effectively used.
Darren Wright 23 Feb 2022

I think this has loads of potential benefits. I know that I would have loved to have access to this sort of information as a commissioner.

Is the intention to add more data in relation to COVID or digital or are you looking for new areas to develop maps for?
1. Miles Sibley 23 Feb 2022
  
  Thanks Darren. We could definitely add more on patient experience of Covid (incl. lockdown, care home visiting, vaccine hesitancy etc) as our "proof of concept" study only ran to Aug 2021, and lots more evidence has been published since then.
  
  But we'd also like to do maps by:
  
  - health condition (eg patient experience of cancer, parkinson's etc)
  
  - health service (eg experience of maternity services, incl. antenatal, labour and birth, perinatal mental health etc)
  
  - the healthcare experiences of specific groups within society.
  
  The sky's the limit really!