What does good public involvement look like? A public perspective

Cathy Rice has been involved with People in Health West of England (PHWE) since the very beginning in various roles including as co-chair of the operational group, editor of newsflash, our fortnightly newsletter, and co-facilitator of our enhancing facilitation skills workshop.

She has also been a public contributor on several research projects and clinical trials over the years both locally and nationally.

We had a chat with her to see what we could learn from her experience.

 

What made you want to get involved with health research in the first place?

I thought it sounded like a worthwhile idea. I hadn’t worked for two years following a stroke and it was a way for me to dip my toe back into the water of the working world.

The first project I was involved in was based at the University of the West of England and was to do with GP training. I explained that I was no longer energetic, but the researcher said all I had to do was be a member of the public- someone who was not from an academic or health background. Although many people get involved in health research related to their own personal health situation, for me it was more like an escape from my situation. After the first meeting, I remember noticing that it was the longest I had gone without thinking I’d had a stroke.

What have you enjoyed most about being a public contributor over the years?

I have loved seeing how things change as a result of my contributions.

On Newsflash, sometimes the key information for an involvement opportunity is hidden away among pages of academic writing. I enjoy extracting the essentials, and making the entry accessible to everyone.

I feel I have a much clearer understanding of how research works. It’s amazing how many years academic research sometimes takes.

What has your experience taught you about what good public involvement looks like?

  • A good contact person is key. It has really helped me feel valued when I have had a trusting relationship with the research staff.
  • Be clear about the role. As with any commitment, people want to know what they will be doing, what is expected of them and what they can expect. This includes being clear about payment; is there any payment, how much and for what, will expenses be covered?
  • Keep us informed, even if that is only an email every few months to say that nothing much is happening. Of course, if there are results to share, let us know. We love seeing the benefits of our involvement.
  • Take what we say seriously. That doesn’t mean we have the final say as naturally everyone has different opinions but listen and ensure our involvement is meaningful.
  • Celebrate difference. Everyone has different personal and professional experience they will bring to the role which means involvement will vary. That’s ok, people are different, and all lived experience is valuable.
  • Facilitate meetings well. Academics have a responsibility to everyone in the room to ensure that all voices are heard. Co-facilitating meetings with a member of the public can help this and they can also keep an ear out for any jargon.
  • Be thoughtful. Think about what the experience of taking part will be like for a member of the public. On one project I was involved in I had to travel quite far to attend a meeting and, after having a stroke, the long train journey to a new place was a big deal for me. The contact person met me from the train station and accompanied me to the venue, which meant a lot to me and helped encourage my further involvement.

Cathy is passing on the baton of newsflash editor so we wanted to take this opportunity to say thank you so much for all your hard work from all of us here at People in Health West of England.

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Top five tips for facilitating public involvement

By Rosie Davies, Research Fellow (Patient and Public Involvement), People in Health West of England

Get any group of people together and you can be sure there will be different views and personalities. In public involvement meetings we love those different voices, however, in order to allow everyone to be heard, not just the loudest person, some facilitation skills are required.

At People in Health West of England (PHWE) we offer a half-day ‘enhancing facilitation skills’ workshop to help people run meetings about health issues with patients and members of the public. The workshop is run by Rosie Davies; Research Fellow at PHWE, and Cathy Rice, a member of the public who has been involved in health research.

Here Rosie shares her top tips for facilitating public involvement groups.

 

On 19 June Cathy and I ran our popular ‘enhancing facilitation skills’ workshop with participants coming from a range of backgrounds including researchers, public involvement staff, voluntary organisations and the public sector.

During the informal and interactive workshop we covered; considering what’s important for members of the public attending meetings; agreeing ways of working together; thinking through different aspects of the facilitator’s role; as well as adapting facilitation style to suit different situations.

Our top five tips for facilitating public involvement are:

1. Agree ground rules

Agreeing ground rules helps to shape expectations and support you and the group to stay on track. It can also build trust and provide a reference point if you need to challenge behaviour later on.

2. Co-facilitate with a public contributor

Having a member of the public as a co-facilitator or co-chair helps to create a sense of shared ownership and ensure that acronyms and buzzwords are avoided.

3. Stay focussed

It is important for you in your role as facilitator to keep the group on track and manage contributions effectively. That means stimulating constructive and focussed debate whilst allowing everyone to have a voice.

4. Be prepared

Having a good meeting includes planning in advance, following up and feeding back afterwards, as well as work during the meeting itself. Think about what is important to the group members, from clear directions to the venue to post-meeting debrief and support.

5. Manage different behaviours

Strategies to cope with different behaviours and vulnerability are useful to build your confidence. During the workshop we share real life examples and discuss various strategies and techniques to ensure all group members can contribute to a successful meeting.

Very friendly environment and facilitators were very good and friendly 😊

The fact that the trainers had ‘lived experience’ of mental health and health issues [worked well]

Really good workshop – very well modelled!

I feel more confident about facilitating

[I am] so pleased for tips on how to deal with different personalities. This is great – not just for facilitating!

Participants at enhancing facilitation workshop June 2019

Here are just a few of the changes participants are going to make as a result of attending the June workshop:

  • Get better on ground rules now I know what they’re for
  • Try to be more reflective when faced with different situations as a facilitator
  • Use volunteers to co-facilitate
  • Think about how I can provide feedback to [public contributor] members more effectively
  • Plan for better pre-event communication and make a checklist for facilitating
  • Ensure that…public contributors…have opportunities to co-chair

Would you like to learn more and build your confidence in facilitating public involvement groups? We are holding another workshop on Wednesday 9 October in Bristol. You can sign up here.

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Health and Care – What’s YOUR opinion?

 

by Mike Bell, Public Involvement Facilitator, May 2019

I recently received an email inviting me to an event at Bristol City Hall entitled ‘Thinking big about online feedback’. It was one of those emails that had ‘cascaded’ through various channels and originated from an organisation I’d never heard of called Care Opinion.

Online platforms such as Twitter, Facebook and the recently launched hyvr all offer members of the public a chance to have their say about health and care in the UK. Within our public involvement team at People in Health West of England, we’ve debated the usefulness and effectiveness of these on many occasions. So, as City Hall is only a five minute walk from my desk and Care Opinion were offering refreshments I thought I’d go take a look.

Dazzling statistics

The first speaker was the CEO of Care Opinion, James Munro who you would expect to be enthusiastic, and he was. Dazzling us with statistics about numbers of users and success stories: over 343,000 stories told, over 9,600 staff listening, 100,000 visits every month with stories on Care Opinion viewed over 83 million times. Fifty or more trusts reporting a better than 95% response rate and, more importantly, the changes made to services as a result of people’s stories. The cynic in me was wondering about James’ maths by this point.

James was followed by the Director of Patient Centred Care (you might think of this as Complaints, PALS or Patient Experience) at Taunton and Somerset NHS Foundation Trust who was equally enthusiastic.  She said that, despite the fears of some staff about the potential for a barrage of complaints, most stories (about 67%) have been positive. Additionally, she added, the negative stories can be responded to quickly, by the most appropriate member of staff which means they rarely become “formal complaints” and everyone is happy.

Next was a lay board member of a London GP confederation made up of 43 surgeries who told a similar success story and by now, members of the audience representing patient experience teams in other trusts began joining in with more praise for Care Opinion.

This was the point where I surreptitiously took out my phone and Googled “Care Opinion” under the table. Once on the Care Opinion website I randomly searched “knee replacement surgery” and found hundreds of stories.  I was able to see at a glance which had been read and which hadn’t, as well as follow any responses by the various trusts.  I could also see where changes had indeed been made to services and where stories had been used as training tools. It seems some of the praise was justified, although there were stories about poor experiences which had neither been read nor responded to.

So, this is how it works

Go to the Care Opinion website (no need to log in) and tell your story about your health and care experience. Care Opinion then moderate it (to make sure it’s anonymous and doesn’t breach their guidelines). They then forward it to the relevant care staff so they can hear what you think. They may also pass the story to Healthwatch or NHS England if they think it’s something they need to hear about. If it’s positive, staff can share the story so their colleagues know they are doing things right. If it’s negative they can respond via the website which, in some cases, may lead to a change in the way things are done.

Someone once said “the greatest barrier to communication is the illusion that it has been achieved” and we see that all too often these days. Where once you would write a letter and hope for a reply within two or three weeks, we now expect immediate responses to texts, emails, WhatsApp messages and Tweets and crikey do we get angry when we don’t get it.

There are clearly examples of stories, good and bad, on Care Opinion that haven’t been responded to and I believe one or two trusts never respond (though you have to wonder why). However, there are plenty of examples on their website where real communication has certainly been achieved and where patients appear satisfied their voice has been listened to.

If you haven’t already heard of Care Opinion and you have a story, good or bad, about the health and care system, I suggest you give it a go.

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Patient and public involvement at the COMBACTE General Assembly 2019

By Michele Kok, Research Associate in Public Health, University of the West of England (UWE), Bristol.

My research around patient and public involvement (PPI) is for COMBACTE, a European-funded private-public partnership between academia and the pharmaceutical industry. Each year, COMBACTE holds a General Assembly hosted in one of its European partner countries. This year it was held from 12-14 March in Bucharest, Romania. I love travelling and have never been to Romania, so was naturally very excited to be able to attend! In this blog post, I shall share my reflections on what I thought was a successful trip, and throw in a couple of pointers at the end for those planning to visit the city.

Some background

COMBACTE consists of four projects. PPI is part of COMBACTE-MAGNET (Combatting Bacterial Resistance in Europe – Molecules against Gram Negative Infections) Work Package 6i. One of our major outputs was a toolkit for involving patients and the public in antimicrobial medicines development research, which our team produced in collaboration with the Bristol-based PPI Panel for Antimicrobial Drugs between September 2016 and August 2018.

The COMBACTE General Assembly 2019 featured PPI in two sessions: a one-hour open workshop on Wednesday 13 March and a short talk in the specific COMBACTE-MAGNET General Assembly the following day.

Our workshop was well attended

‘Practical aspects of implementing PPI in antimicrobial medicines research’ was the title of our workshop aimed at promoting and supporting the use of the PPI toolkit. Participants were from various organisations and job roles, including principal investigators from industry and academia, and even the Chair of the European Forum for Good Clinical Practice.

In the spirit of collaboration, we asked interested participants to identify which stage of the antimicrobial medicines development lifecycle was most important and relevant to their own research ahead of the workshop. Their selections helped us plan the topics to focus on; PPI in research agenda-setting and clinical trials. Participants were engaged and raised useful questions for discussion. There was a sense of increased awareness and interest in PPI within COMBACTE.

This was similarly reflected in the response to Andy’s talk the next morning, where several key people wanted to know how he thought PPI could be embedded in COMBACTE-NET, and what could be done to increase patient awareness of the importance of antimicrobial research, to encourage patient involvement. COMBACTE-NET is the network responsible for generating innovative trial designs to facilitate the registration of novel antibacterial agents.

Final thoughts and tips

After years of persistence and hard work, our team was very pleased with the success of this year’s workshop and the raised profile of PPI within COMBACTE. There is more to be done to ensure PPI is embedded in antimicrobial research and to promote best practice, but I left the General Assembly with a feeling of personal satisfaction (and relief) at the work done so far.

I had extended my stay in Bucharest and over the next few days, learned so much about the interesting history of the city and country. I highly recommend free walking tours in any European city you visit. Besides famous places, they take you to ones you would never have discovered on your own and give you insights that only a local could. If, like me, you enjoy trying local traditional food, I recommend papanaşi, a Romanian dessert of fried doughnuts served with sour cream and mixed berry jam!

Papanaşi

Papanaşi

Michele at Primӑverii Palace

Selfie by the swimming pool in Casa Ceausescu (or Primӑverii Palace) – notice the mosaic!

If I’m fortunate enough to attend next year’s COMBACTE General Assembly, I shall be sure to share my reflections when I return. For now, keep calm and keep doing PPI!

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Say it for our admin staff!

The departure from PHWE of Kim Thomas, the Team administrator and PA, prompts Hildegard Dumper her manager for the past 3 ½ years to reflect on the vital role a good administrator plays in the success of a project.

The story starts in February 2014, when I was appointed to set up a new team that would support four partners to develop a strong public involvement approach to their work. The partners were Bristol Health Partners (BHP), CLAHRC West, NIHR CRN West of England and the West of England Academic Health Science Network (WEAHSN), with University of West of England providing the Academic Lead. When PHWE started we were originally based in the offices of WEAHSN in S Plaza. Rosie, Kim and I started our life with PHWE there. It was a time of great optimism and adventure. WEAHSN had just been set up, CLAHRC was embarking on new horizons, CRN was in the middle of being re-organised and BHP was developing a new business plan. This was an opportunity to put in a new approach to public involvement; to challenge the traditional NHS tendency to work in silos, and work in a collaborative way on the issue of public involvement. By sharing resources we aimed to increase the partner’s efficiency and effectiveness in public involvement.

Traditionally there is a big divide between public involvement in health research and public involvement in service provision and improvement. The public involvement staff in each sector rarely works together. We were being given the opportunity to work across these silos, sharing knowledge and expertise and avoiding duplication. There was a sense of adventure that comes with the realisation that we were pioneers in a new way of working and were treading new ground.  PHWE were going to put in place a model that would show how it could be done; we were going to change the world – and the admin post was pivotal to making this a success!

WEAHSN, CLAHRC West, BHP and CRN are all hosted by different organisations. In August 2014, Kim set about bringing together the culture, systems and processes of 4 quite separate host organisations – UHB, RUH Bath, UWE and University of Bristol with NIHR being an additional factor here and there. These were systems affecting how PHWE finance, expenses claims, reporting mechanisms, email addresses, website, codes, passwords etc had to be carried out. Kim became good friends with all the important people in IT, catering, estates, travel firms, HR, hospitality, venues, hotels and so on. She won all of them over with her charm and good humour, always done with such cheerfulness and a ‘can do’ attitude. Perhaps the fact that she came from outside the NHS helped – she brought a fresh eye to long standing challenges. In addition she came with experiences and knowledge of systems and practices which could improve the efficiency of PHWE and hence its partners also. Everything was a practical challenge which could be overcome with a bit of determination.

It was Kim’s patience and dogged refusal to give up that was instrumental in getting the people in the organisations she dealt with to make compromises. Her patience and recognition of her role in educating finance, HR and other staff, on the complexities of the project led to small but significant results. Small but important bureaucratic changes were made; expense claim forms were amended to be more user friendly for public contributors, finance staff were prepared to have some flexibility in managing claims and IT staff went out of their way to help make the different systems compatible.

Her leaving will be a great loss to us all at PHWE. Not just because she is a lovely person, but with her goes all the memory and knowledge that she has acquired in her role. We couldn’t have achieved what we have without her.

So thank you Kim for all your hard work, for having been such fun to work with and for having made the last few years such an adventure!

 

 

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New Public Involvement evaluation workshop

Our new workshop on the evaluation of public involvement is developing well.  We’ve run early versions of the workshop with the Centre for Appearance Research at the University of the West of England, and in October 2018 for the first time we delivered it for the People in Health West of England regional network’s learning and development programme.  The workshop includes sharing some of the key issues and debates about the evaluation of public involvement, and then outlines three different approaches to help participants plan and develop their own evaluations.  We’ve had really useful feedback and have now taken it to the conference in Newcastle on ‘International Perspectives on Evaluation of Patient and Public Involvement in Research’ 15-16 November 2018.  We are looking forward to sharing the outline of our new workshop and getting further feedback from colleagues to ensure what we offer hits the spot.  We hope that we might find some new collaborators who would like to deliver our workshop so that we can develop it further.

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What does co-production actually mean in practice? asks Hildegard Dumper, the West of England AHSN’s Patient and Public Involvement Manager

You might have noticed there are a number of buzz words currently flying around, the most common starting with the prefix ‘co’: co-produce, co-design and co-create. Even NHS England talks about co-design in its Five Year Forward View. I thought I would share with you my understanding about these ‘co’ words, and what they mean for us.

The first thing we need to understand is that all these ‘co’ words describe an approach to working with the public that regards each individual, regardless of their role, as having a valuable contribution to make. Central to this approach are principles of reciprocity and equality. We at the West of England AHSN have committed ourselves to being guided by these principles and working in a co-produced way.

There are a number of definitions of co-production. The National Co-production Critical Friends defines it as…

‘a relationship where professionals and citizens share power to plan and deliver support together, recognising that both have vital contributions to make in order to improve quality of life for people and communities.’

The New Economic Foundation / NESTA suggests co-production is…

‘delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours. Where activities are co-produced in this way, both services and neighbourhoods become far more effective agents of change.’

 NHS England’s Citizen’s Assembly describes co-production as…

‘service users, or the public in general, working in partnership with service providers or commissioners to jointly make decisions.’

So what does this actually mean for us in practice? There are a number of things that need to be considered when deciding to work in a co-produced way.

1. What’s in scope?

Decide which pieces of work are suitable for co-production and what can and cannot be achieved by involving people in this way.

 

2. Identify resources

Consider what resources you have available. Think about:

  • Staffing – who will be managing the project?
  • Funding – have you the resources to pay travel expenses and/or people’s time? See our guide to paying expenses.
  • Timing – involving people takes longer. What is your time-line?
  • Identifying suitable people – what kind of selection process would be fair and appropriate?

3. Produce role descriptions

Develop and agree with your public contributors a role description which clearly states the time commitment expected from them, the length of their involvement and payment details (a template role description is available).

4. Create a level playing field

Identify where power imbalances can exist and take steps to minimise them. For example, don’t have meetings at a time that excludes public contributors from attending or from taking part in the background thinking and development of a project.

5. Value difference

Work with a wide range of people, using different people for different pieces of work.

It has been shown that where genuine co-production has taken place, it can deliver better outcomes, support better use of scarce resources and improve the well-being of those involved – clearly a win/win situation for the West of England AHSN.
Posted on February 24, 2016 by Hildegard Dumper, Patient and Public Involvement Manager for the West of England AHSN

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Hallowe’en at the young people’s advisory group (YPAG)

Hallowe’en fell slap bang in the middle of half term this year which gave us a great excuse for a gory themed October YPAG.  The group “decorated” the room with spider webs, spiders, pumpkin lanterns and bats.  Mike provided blood-filled syringe pens and the group had a chance to draw blood from dismembered arms.  Of course there was work to be done, commenting on information sheets for a quality of life survey, deciding on website icons and ranking the issues that most affected them while at school.  Lunch was provided and the researchers all brought trick or treat snacks so no excuse for going home hungry.  Evaluations from researchers were all very positive and the group members all seemed to enjoy the day.  If you are young and would like to join or you  know any young people aged 10 to 17 who might like to join us, please contact Mike mike.bell@bristol.ac.uk to find out more.  If you are a researcher and would like to consult the group about your research, contact Mike as well.

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Nicky Williams moving on from co-chair PHWE

Many congratulations to our co-chair Dr Nicky Williams who has been appointed to the exciting post of National Director of Support & Delivery for Health and Social Care Research for Wales and so will be stepping down from her role with PHWE.  Nicky has been a wonderful champion for patient and public involvement for many years and was one of a small group who came together in 2008 with the vision to collaborate to support involvement in research across the West of England.  This led to the innovative creation of People and Research West of England which Nicky ably chaired from 2010-2013.  With the advent of the West of England Academic Health Science Network and CLAHRC West in 2014, this gave us the opportunity to greatly extend the work of PRWE and embed it in the new West of England partnership structures.  Thus PHWE was formed with a stronger public voice including a public co-chair working alongside Nicky.  Nicky has continued to lead with her characteristic combination of strategic vision and superb facilitation skills.  Nicky will be badly missed by all of us at PHWE but we wish her all the best at her exciting hew national role in health and social care research in Wales.

Posted on December 16, 2015 by David Evans, Professor in Health Services Research Public Involvement at the University of the West of England

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Developing effective patient and public involvement (PPI) takes time and commitment, says the West of England AHSN’s Patient and Public Involvement Manager, Hildegard Dumper

Two events in the last week have reminded me that the development of good public involvement takes time.

At a panel discussion on cities, health, people and leadership at the Festival of the Future City last week, Professor David Evans pointed out that INVOLVE is now 20 years old. INVOLVE is funded by the National Institute for Health Research (NIHR) to support public involvement in the NHS, public health and social care research. It is now well established as the key body to drive forward and support good practice in public involvement in research, providing the benchmark for other areas of health and social care.

In the context of an NHS that has gone through several major structural changes in the past few years, this consistency is a major achievement.

I was reminded again how the development of a truly patient and people led health service takes time at the People in Health West of England Awayday this week. During an exercise reflecting on our achievements over the past year, we realised that the idea for a joint PPI initiative was first mooted in 2008, seven years ago. This evolved first into People & Research West of England, before being re-launched as People in Health West of England (PHWE) in 2014.

Throughout this time the network has been chaired by Nicky Williams, Deputy Director of Research, North Bristol NHS Trust. Nicky is now leaving us to take on the post of National Director of Support & Delivery for Health And Social Care Research for Wales.

Nicky told me: “It has been a pleasure to co-chair the strategy group with Cathy Rice over the last few years and I look forward to hearing all about the work of PHWE in the future. I’m really proud of how PHWE has grown from the little seed of an idea that we first discussed in 2008 – a real credit to the commitment of the public contributors and staff involved.”

Posted on November 27, 2015 by Hildegard Dumper, Patient and Public Involvement Manager for the West of England AHSN

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