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Your chance to dissect health research! When is co-production not co-production?

ucjunhu16 May 2020

This blog it brought to you by Niccola from UCL Centre for Co-production. Read on to find out more about this opportunity to get involved in exploring co-production in depth

Hi everyone,

Hope you are doing ok during these different times? It was lovely to see, and chat to, so many of you online for our first virtual Co-production Network session on 12 May – 91 people joined the session in total, amazing! So so much learning emerged and a lot of connections were made! This brings me to another connection made recently…

First though…

I have some questions for you:

  • Are you someone who has, because you have lived experience, been part of patient public involvement work, co-produced health research or a co-produced project? (If you’ve been involved in the Centre co-creation work or Pilot projects then the answer is yes!)
  • Would you be up for reading a few short academic health research papers and a comic strip about co-production?
  • Are you up for sharing your thoughts openly and honestly?
  • Did you answer yes to all these things? Great! Then you might be interested in this opportunity…

Meet Oli Williams, a researcher funded by THIS Institute. THIS Institute is based at Cambridge University and works directly with NHS patients and staff, as well as academics and the public, to produce evidence to support work to improve healthcare, and health systems in England.

Photo shows Oli holding a painting, making a funny face and surrounded by books and wine glasses!

What is this opportunity all about?

Oli has been funded to conduct a study of different definitions used to define co-production and the different practices used to co-produce. He’s trying to find out what works well, and in what situations, when co-producing. Oli approached the Centre as he is keen to learn from us and what we are trying to achieve. He’s particularly interested in what we think helps bring the theory of co-production to life and what hinders it. And, crucially, Oli is committed to our Principles to live by.

Oli wants you to be involved in his research study, starting by dissecting a paper he has written with lots of other people interested in and doing co-production. By dissecting we mean read, ask questions about, and share what you do and don’t agree with. The paper, Lost in the Shadows, explores what co-production is, and what is needed if we want more health research to be co-produced. There is a comic strip that illustrates the findings really well or if you use Twitter you can also read more about his work in this story thread. Lost in the Shadows is a response to an article written last year (that you may have seen/heard about) called The Dark side of Co-production.

Personally I really struggle with reading academic papers (so many words and so much jargon!) if you feel the same, that is totally fine. These papers are shorter than usual academic papers (which is nice!) and one of the points of this opportunity is to think about how to make ‘open access’ papers more accessible, e.g. by changing the way they tend to be written and communicated!

This is a paid opportunity (in line with INVOLVE guidelines of £150 for a whole day and £75 for half) and not just a one off. The idea is to form a small group (of 4 people) to do this work with Oli. Depending upon the group and how much you want to be involved, there is scope to increase your involvement over the 2 year period within which he has to complete this project. One of the things Oli would like to do in this time is to co-produce resources to help organisations and individuals do more and better co-production. If that is something you would like to do, then do not miss this opportunity!

What do I need to commit to?

The current ask is outlined below, although this is flexible, should the group wish to change the amount of involvement they have:

For the first meeting:

  • To meet up (most likely via Zoom to allow for social distancing) on Tuesday 16 June, 11:00 – 15:00 (with a proper lunch break!) to discuss the two short journal articles and the comic strip (mentioned above) about co-producing health research. You will be paid for two half days work because this will involve spending time before the get together to read the articles/comic and make notes (if you would like any of the documents shared in a different format please just ask). I don’t know what you think but this sounds like loads of fun to me! A chance to get your red pen out and activate your inner teacher! 🙂
  • To be part of writing a team blog for the Centre about the team thoughts on the article/comic and the plans for this work with Oli

Longer term commitment

  • The plan is for this to be the first of up to 4 get-togethers with Oli over the next two years. He wants to work with you at key points of his project. This could be to discuss things like his research findings, what he should do with them, or to design resources to help other people co-produce health research. The important thing is that he wants to collaborate with you and make decisions together.

Please note: due to the current lockdown as a result of coronavirus it is unclear whether face to face sessions will be possible, or if people will want to meet up in person. If the group decides (once lockdown has been lifted) that they would like to meet face to face, and are all able to, then the sessions will take place in a location suitable for the group.

A photo from our last co-creation session – a table covered in Lego, and a Play-Doh Lego sculpture of a question mark and squiggly lines pointing outwards that says – “Radiating Questions”.

Photo shows a table covered in Lego, and a Play-Doh Lego sculpture of a question mark and squiggly lines pointing outwards that says – “Radiating Questions”.

What is in it for me?

  • Up to 4 days paid work
  • Travel costs paid for (if it is a face to face meeting)
  • Lunch! (if it is a face to face meeting)
  • A chance to dissect work on co-production and share your open and honest thoughts – Oli wants to hear it all!
  • A chance to work closely with Oli and the other people in the group, and get to know people who share your passion for co-production
  • A chance to co-create resources that will help to promote more and better co-produced research

How do I get involved?

If you are keen to get involved please email the following to Rory on coproduction@ucl.ac.uk by the end of the day on Friday 29 May 2020 at the latest:

  • Your name
  • The best way to contact you (email, phone, or something else)
  • Any co-production you have been involved in to date and why you want to be involved in this project (a paragraph or 2 is fine)
  • Whether you can make Tuesday 16 June 11:00 – 15:00 (with a lunch break)
  • Any dietary requirements

Please also let us know:

  • If there is anything we can help you with in relation to accessibility (for example you can submit your interest via phone, video or Whatsapp voice message if it is easier for you, or we can send you all of this info in the mail. Just let us know what would help)

If there are a lot of people who want to get involved then we will draw the 4 people who will make up the group out of a hat (with measures taken to ensure diversity) on Monday 1 June 2020.

Looking forward to hearing from you!

Thanks!
Niccola

(Blog content edited – 20/05/20)

Keep calm and co-produce: we’re going virtual!

ucjunhu17 April 2020

So… times have changed a little haven’t they? We are still here though, and very much still working on co-producing the Centre. We hope that getting involved in co-production activities will provide you with a welcome distraction from the day to day. On the other hand, we totally understand if getting involved at the moment isn’t really for you. These are exceptional times in relation to coronavirus and we all have to deal with it however best works for us. You can read a little more about our thoughts on the situation, and where co-production fits, in our recent blog – “Reflections on a changing world: the importance of co-production”.

We are still on track to launch the Centre officially in October, either virtually or in person (although this does depend on how things develop in coming months in relation to the coronavirus lockdown). The plan is that we will run virtual co-creation and networking sessions in during the summer (and by this we mean online but also using other methods as we are aware not everyone has nor wants to use a computer or phone). Outlined lower down in this blog is info on how to get involved in these upcoming sessions. We’d love to have you join, and will be on hand to help with any tech questions or irritations!

Thanks and see you soon I hope!
Niccola

A group of people sat around a table of orange post-it notes (with writing on them) having a discussion – our old reality!

So what next for the Centre?

Well… there is lots to do. We’re at a really important point of development for the Centre, where we need to focus on our future – get specific about what we’re working towards, how we’re going to do it, and how we’re going to make sure we’re sustainable financially. There’s some big decisions to be made about our strategy, our approach to partnerships and fundraising, and our identity and profile.

And that means one thing – we want to work with you! As you know, we’re not just interested in encouraging others to co-produce, but we’re walking the talk and co-producing the Centre itself, as a community. We usually do this through face-to-face sessions (as seen in the photo above), but obviously that’s not possible at the moment, so we’re getting creative and are going to do things a little differently. But that also means that we can get even more of our community involved than we’ve been able to before, and hopefully continue using this variety of methods after lockdown is over.

We’re starting by setting up some virtual co-creation and co-production network sessions. By ‘virtual’, we mean using both online platforms where we can get lots of people together, and also using other methods. One of our ‘Principles we live by‘ is ‘being accessible and inclusive of all’, and we know that not everyone is able to meet online, or may not feel comfortable doing so, so we’re going to make sure we have multiple ways to co-produce with us. Whether you’re a researcher, a commissioner, a medical professional, a patient, a carer, a service user, or simply keen to get involved in something a bit different and inform how research is carried out, then you are more than welcome to be part of our community (this blog explains what our co-creation sessions are like, if you’d like to get an idea of what to expect: “What’s a co-creation session like?”).

We’re also really keen to keep offering the chance for anyone interested in or doing co-production to come together and learn from each other, so will be continuing to run virtual Co-production Network sessions too. These will focus less on the development of the Centre itself and more on meeting others, sharing co-production experiences and getting ideas.

Come and join us!

Opportunities to get involved

As a community we are working on lots of things at the moment and so have a variety of opportunities coming up. Have a read of the document below, see what interests you and find out how to get involved. We’re looking forward to working with you!

We ran a poll on Twitter and called or emailed as many people as we could to find out how you would prefer to join these virtual sessions. The winners were Zoom for online, and conference calls for offline. However, we are aware that these methods will not work for everyone so we are also planning to share what we are working on as a community in other ways, so you can input that way too. At the moment we’re thinking Google docs, or printed and posted papers, but we’re open to using other methods as we get used to working this way.

If Zoom or conference calls don’t work for you, but you’re still keen to get involved, then we still want to hear from you – please get in touch for a chat so we can work out the best way to get you involved.

Part of graphic illustration of the work and discussions to date about the visualising the Centre (Photo and design credit: Debbie Roberts, Engage Visually)

Photo and design credit: Debbie Roberts, Engage Visually

Payment for taking part in co-creation sessions

Another of our ‘Principles we live by’ includes ‘commitment to addressing power imbalances’ and so we have been paying for the time of our co-producers who do not attend our co-creation sessions in a paid capacity (i.e. as part of their job or who are employed in a full-time role). We do this in line with INVOLVE guidelines, as this was the decision made in our early co-creation sessions, back in 2017/18, to ensure fairness in who is paid, what for, and how much.

However, as the Centre has developed, our activities diversified and our community grown, we know we need to co-produce our own payment guidelines in time for the Centre launch – that’s on our list for this summer.

In the meantime, if you are joining one of our co-creation sessions (not the network sessions, as these are more informal) as a member of the public and would like to receive payment for your time and contribution, please get in touch and we will get you set up on our payment system.  We can also offer support with paying for phone minutes, landline call charges or phone data in order to take part in conference or video calls – let us know what you need.

Security and accessibility

We know this can be a worry with online meetings, but we’ve checked with those in the know to ensure that that our Zoom login settings are safe and secure. We’ve also made sure that we can enable closed captioning for those that would like them to support their participation. In addition, Zoom has several other accessibility features in place as standard.

However, if you have any questions or concerns please just ask. We hope to see you at a session soon!

Get involved in the UCL Centre for Co-production in Health Research

Info on signing up to the specific sessions is in the document above.

Email Rory coproduction@ucl.ac.uk if you’re curious about the Centre. Or:

  • Let us know if you’d like to join in collaborating on our blog! You could tell us a bit about yourself, share learnings from co-production projects, or let us know if you have any other ideas.
  • Send us resources to feature here next month, or tag us on Twitter @UCLCoPro

If you’d like to keep hearing about what we’re up to and what we’re learning at the Centre, feel free to sign up for our newsletter.

Please email Rory at coproduction@ucl.ac.uk if you’d like a PDF or Word copy of this blog.

(Cover image description: A picture of a laptop, phone, plant, coffee cup . Image credit: Ben Kolde, Unsplash )

Introducing Rory!

Rory10 April 2020

This blog is written by Rory, our new UCL Centre for Co-production Project Co-ordinator

I knew I would be writing an introductory blog post about myself but it never crossed my mind that it would come from my kitchen!

And yet, here we are, weeks into social distancing and working from home – or in my case, working from kitchen. Absurd and cosy at the same time, but even more so, it feels like there’s much to be grateful for. But first, introductions!

My name is Rory and my home has been South London for almost six years now. Initially it was Elephant & Castle, as it was very close to the Waterloo Campus of King’s College London and walking distance from a Nando’s, which at the time was what I cared most about. It turned out to be also conveniently close to Vauxhall, where Marie Curie England is based, and where I got an internship at their Policy and Public Affairs team. Those few months changed my focus from being obsessed with studying history to developing a passion for social engagement and end of life care.

 

Image of Rory, she is surrounded by plants and also sun, rainbow and cloud emoji’s

After collaborating with some incredibly inspiring unpaid carers on a research project for my master’s degree at King’s, I was almost certain that becoming a corporate lawyer was not my calling. I had that in mind since I could read and help my two lawyer parents with photocopying and filing papers, but that was back in Budapest, Hungary, which now seemed like it might as well be on the Moon: it was not home and it was not the place I knew most. Home for me was now not a place but a possibility to continue learning from the most brilliant people living and working in all sorts of communities. First, this was the NHS, then a tech start-up, and now in 2020, a new role split between two fascinating centres linked to research. One of them is of course the UCL Centre for Co-production. The other, the Biomedical Research Centre, is a partnership between UCL and the UCL Hospitals NHS Foundation Trust, aiming to take innovations in basic science and turning them into treatments and therapies that have a direct impact for patients. I am focusing on the Your Data Our Challenge project.

This pandemic has been a different experience for everyone, so, beyond the general points made about anxiety, personal losses, the duty to help others, and the inconveniences of staying indoors, the only observation I will make is how lucky I am to have the means to write from my kitchen and be free from mental and physical pain. And, I can still pursue my passion, if I try hard enough. Every day is a chance to learn something, and now seems to be the time to learn how to cope and continue. Which is why, our team with help from Centre co-producers is collecting a few resources to help you to engage with each other even while being apart – keep an eye out for another blog on this coming soon! Co-producing without face to face contact will be different but I am very much looking forward to it. I’m hoping to meet all of you in some digital form very soon. But for now, have a look at the cover picture to this blog so you can see where i’m based, this is my new home office! Lovely to meet you all, hello!

Get involved in the UCL Centre for Co-production in Health Research

Email Rory coproduction@ucl.ac.uk if you’re curious about the Centre. Or:

  • Let us know if you’d like to join in collaborating on our blog! You could tell us a bit about yourself, share learnings from co-production projects, or let us know if you have any other ideas.
  • Send us resources to feature here next month, or tag us on Twitter @UCLCoPro

If you’d like to keep hearing about what we’re up to and what we’re learning at the Centre, feel free to sign up for our newsletter.

Feel free to email Rory at coproduction@ucl.ac.uk if you’d like a PDF or Word copy of this blog.

(Cover image. Description: Rory in her kitchen with her laptop and some daffodils wearing a yellow t.shirt and bobble hat)

Reflections on a changing world: the importance of co-production

ucjunhu9 April 2020

Niccola and Lizzie share their thoughts on the current situation for us all in relation to coronavirus and what this means for the Centre for Co-production

How are you coping at the moment? We’re both feeling pretty similar – lucky and thankful about our personal situations, but still sometimes struggling to say positive. We know others are feeling the same, or going through some harder times, so as a Centre we’ve tried to do a few small things that we hope might help in this period of coronavirus lockdown. Our #PositivityPosts are one – if you use Twitter please join in! Share things that have made you smile at this time – perhaps some nature you saw out of your window, a recipe you cooked, a craft you started to pass the time, or anything else at all! We’d love to hear about it! If you have something to share but can’t be doing with social media feel free to drop us an email or give us a call instead to tell us. And please let us know if you think of any other things you think we should be doing at the moment, we’d love to hear suggestions!

If you are looking for help in relation to your mental health, the 4 Mental Health website co-created by Centre co-producer Sarah Markham amongst others, is a great place to start. You can also check out our resources blog for more info which might help during this period of lockdown and beyond.

Co-production: more relevant than ever?

These strange and unsettling times have also had another effect – it has renewed our belief in the fundamental need for co-production and the work that we’re doing as a Centre. Now, more than ever, it is vital to ensure that research and decisions being made about our health – and our lives more broadly – does not take place in isolation. These decisions should not be taken by any group alone, but in partnership with those involved in its delivery, and those who will be affected by it in different ways. This is especially important for those whose voices and needs are less often recognised.

A very stark reminder of the importance of co-production came from our friend and Centre community member, who has a child with an underlying health condition. She explained that she had been called up recently by her GP to be asked if she wanted her child resuscitated should they contract coronavirus?! She was understandably horrified, as were we to hear about this. This is the type of thing that co-production would instantly put a stop to. Had our friend, or anyone else like her, been part of the decision-making around this policy to call up families with this question, she would have told them exactly why this was a really bad idea.

We know that co-production isn’t always quick or necessarily easy, and that can be difficult when there are lots of other pressures on our time and resources. But researchers, healthcare practitioners, patients, carers and community members working together to shape research can also save time and resources in the long run. Whether that’s identifying problems which would otherwise not have been spotted until much later, or coming up with new and innovative ideas, the combination of perspectives that co-production brings to the table makes for research which is more meaningful, more likely to reach those who need it, and more likely to make a positive difference to people’s lives.

Hands in the air with speech bubbles above them. (Image credit: https://www.sjuhawknews.com/)

That’s why we’re so passionate about co-production, and why we’ve been coming together to learn about how we do it well, what difference it makes and how we can share that far and wide. As a Centre and a wider community of co-producers, we’re determined to change how health research is designed, delivered and applied in the community, putting people at the heart of all those processes.

And our work carries on! We may not be able to meet face-to-face, but we can do it virtually and we are working on lots of opportunities for you to get involved with – keep a look out for other blogs coming soon where we will share more information.

We know things are hard right now. But we hope that being part of the Centre community can help you feel more positive, more connected, and that you’re making a difference.

We look forward to chatting to you soon!

Thank you as always
Niccola & Lizzie

Get involved in the UCL Centre for Co-production in Health Research

Email Rory coproduction@ucl.ac.uk if you’re curious about the Centre. Or:

  • Let us know if you’d like to join in collaborating on our blog! You could tell us a bit about yourself, share learnings from co-production projects, or let us know if you have any other ideas.
  • Send us resources to feature here next month, or tag us on Twitter @UCLCoPro

If you’d like to keep hearing about what we’re up to and what we’re learning at the Centre, feel free to sign up for our newsletter.

Feel free to email Rory at coproduction@ucl.ac.uk if you’d like a PDF or Word copy of this blog.

(Cover image. Description: an illustration of people of all ages. Image credit: www.sjuhawknews.com)

Engagement in a time of social distancing

Briony Fleming25 March 2020

This blog was written by Helen Craig (Public Engagement Manager – SLMS) bringing together the thoughts and experiences of the whole engagement team.


What does engagement mean in a time of social distancing? That’s the question we’ve been asking this week, as our team, along with so many others around the world, have been seeking to support each other and maintain the advised social distancing.
Public and community engagement is all about reaching outside our immediate environment– it’s about people, trust, and relationship-building and so much of it relies on face-to-face contact. Many of the people we support are working with communities who are most at risk during this outbreak. They support those experiencing health-inequalities, recovering from trauma, living in poverty, who are disabled, older or have poor mental health, and much more. These communities and those who support them are pushed to their limits at times like these and we all want to continue to support these partners and their users. We’re personally aware of many projects where research and teaching engage with community partners are having to be dramatically re-thought due to the COVID-19 response.
But there is still real value in connecting. Public engagement does not need to be face-to-face – what it needs to be is open, honest, and responsive to your own and your partner’s needs. This will be an incredibly difficult time for many people, especially those in the Voluntary and Community, creative, freelance, and patient care sectors. So we’ve put together this list of advice and tips from our team to help you navigate your projects and be the support your partners need.

Open up

Reach out to your partners, and have an honest discussion about what they need – how can you work together in this new environment? What your partner community needs may have changed as a result of current activities. Asking those questions can help open up a useful dialogue.

We’ve found that a key part of engagement is finding a shared language – you and your partner might need to find a new way of communicating and that could be something outside your comfort zone. Whatever happens, be clear about what you and they are able to offer and what you can’t– and bear in mind that any support, however small, can make a difference in a trying time.

Be flexible

What you had planned to do, will most likely now change. You may have to work to a different time-line, different outputs and maybe even a different end goal, being flexible about this and the changes you need to make can help you navigate this difficult time.  If you see need in your public groups, can you reach out to your funders to see if there is a way you could repurpose your grant? Most grant-makers understand that projects develop and change as they progress. If you are able to justify why you want to spend your grant differently most will be open to this.

You can explore engagement methods which don’t require meeting in person, even if this means your project ends up looking very different from the way you envisaged it. Make sure you record and share your reflections about any changes you make – there will be many people in the same boat, and your experiences could help others in this unusual time.

Use your networks

Think about your own networks and how you could leverage them for support in engagement and in your work in general. Are there people you know using methods of engagement you could learn from, sharing resources you could pass on to your partners, or who are sharing their skills and expertise. Staying connected, responsive and complementary to other service provision out there will help maximise the usefulness of whatever it is you do.

Use social media

If you have an active social media presence, reach out to people who follow you if you think they can help. But bear in mind that different networks, and users, have different audiences. Where do your partners and publics get their information? Are there any channels or networks that you might be able to access who could help you engage? When you know what your partners need, you will be more able to chose the tools that work for them.

Be thoughtful in your tools

Thinking of moving your engagement online? Be thoughtful about the platforms and engagement methods your public groups use – many people primarily access the internet through their phone, for example, so websites that are not optimised for mobile use will be unhelpful for these demographics. Equally, think twice before suggesting expensive or exclusive software that people may not have access to. Skype, Zoom and many social media platforms offer cost-free methods of engaging, but they may involve downloading and installing new software. So ask people what works for them: we advise people doing public engagement to try to go to where your publics are, rather than asking them to come to you – and that applies online as well.

Get informed

Review your work, your public engagement plans, and any new timelines you need to be working towards. Keep updated on official guidance and support available in relation to COVID -19. Read the latest advice from UCL, and read UCL advice on remote working– your own institutions, funders and contacts will likely also have advice to be shared.

Plan for the long-term

Writing your own theory of change can help you see where to go next, as well as illuminating risks and challenges. One challenge we’re hearing a lot at the moment from the projects we support, is the struggle to spend their grant now that face-to-face events are unable to take place. It’s worth thinking creatively about how you can use your resources now – can you buy equipment, or pay for services in advance? Can you employ community partners now to do some thinking and exploratory work that will be used in the future? If you’re asking people to engage with you over the phone, can your department cover phone bills for both you and your partners? This will help keep partnerships alive, and provide financial support to groups who might otherwise struggle.

Theory of Change template (Word) / Theory of Change template (PDF)

Many thanks for reading. We’re aware that this information is very much drawn from our own personal experiences, and focused towards researchers in partnerships with community groups in specific ways. Please do leave any further advice in the comments, share with us on Twitter (@UCLEngage), and do reach out to us on publicengagement@ucl.ac.uk if there are any specific areas that you’d like advice on.


Further reading and advice:

NESTA have published a blog asking “How can we support the voluntary and community sector as they respond to COVID-19” – at the link here.

The National Coordinating Centre for Public Engagement is pooling their advice around NCCPE –Meaningful Engagement – Online Events. They also have some already published guidance for engaging through social media at this link.

This link to a primer on holding online events and readings from Better Evaluation.

This piece on Community Based Learning in times of Social Distancing, Isolation and Quarantine from Portland State University

And finally, a briefing on ‘Equality Diversity and Inclusion in Extraordinary Times’ (PDF) from Kamna Patel, Vice Dean for Equality, Diversity and Inclusion at the Bartlett advises on considerations for EDI in these extraordinary times, especially for your work collegues.

The National Council for Voluntary Organisations (NCVO) has collated guidance and support for charities dealing with the impact of the Corona Virus as well as  keeping a rolling blog page of updates on support for charities. 

Beacon Bursary at the BFI Flare

Briony Fleming16 March 2020

The UCL Engagement Team, on behalf of one of our Beacon Bursary funded projects, would like to invite you to explore the poignant stories of three LGBTIQ+ refugees who fled Venezuela in search of a better life in Brazil this March at BFI Flare, London’s LGBTIQ+ Film Festival.


UPDATE: As of the 16th March the BFI Flare Festival has been cancelled do to ongoing action as a result of the Covid-19 Virus outbreak.

The 26-minute documentary is the result of a collaboration between UCL Anthropology lecturer and filmmaker Dieter Deswarte and current and former residents of the Casa Miga shelter (the first shelter in Brazil for LGBTIQ+ refugees), as well as a number of local support organisations in Manaus, Brazil.

Funded by a public engagement Beacon Bursary from UCL Culture, Dieter spent four weeks at Casa Miga with residents of the shelter, training them in filmmaking skills, and collaboratively developing the documentary ‘Hazte Sentir’ (‘To Be Heard’). The project gave the residents of Casa Miga the opportunity to reflect on, document and communicate their experiences of stigmatisation and mass migration. The resulting documentary gives voice to and raises awareness of the challenges faced by LGBTIQ+ people in Venezuela and Brazil.

Participant in the 'to be heard' film

Participant being interviewed as part of the ‘To Be Heard’ film

The documentary will also be screened at Ethnocineca festival in Vienna, Austria in May.

Hello, goodbye and the next steps for UCL Centre for Co-production

ucjunhu2 March 2020

Hi there everyone! I’m back. And… Ishé my son is now over 5 months old! Crazy how time flies! Here he is in his big boy highchair!!

Ishé in a highchair holding a purple sipee cup

It’s great to be back, I’m looking forward to really getting stuck into the next phase for the Centre – securing our long term sustainability. This is a big job! One I’m hoping you’ll all join me in working on. I’m starting by collating everything we’ve done as a community to date, all of our work since 2017 including info from the great sessions that have happened whilst I was off. Then once collated I’m going to attempt to turn it into a very draft version of a strategy for the Centre. I will then be in touch to share this so that we can refine it together. This requires maximum focus and Rory (more on her below!) will need a little time to get up to speed once she starts. As such, I’m going to put a hold on sending out more newsletters until April. I’m really sorry about this but rest assured we will be back with bells on from April onwards! If you would like an update in the meantime, have a question or would just like a chat please feel free to email or phone me.

There’s one other thing… I’d like to say a massive thank you to Rachel, Susan and Lizzie for all of their hard work – they’ve done an amazing job! Unfortunately, as we’ll miss them, Susan has now left to go back to Canada and Rachel is off soon to her new role (with an amazing holiday in between! I am not jealous about this at all!!). Lizzie is still very much here though and we had a new project co-ordinator called Rory start last week, she will I’m sure tell you more about herself very soon!

Rachel and Susan asked me to share the below updates from them:

Rachel

Rachel and Centre co-producer Sudhir creating some impressive lego artwork at the Nov 2019 evaluation co-creation session

Thanks Niccola! Yes time for me to say farewell for now. It has been an immense privilege to hold the reins since October. I’ve met fantastic and committed people who are resourceful and thoughtful in their approach to tackling complex health issues. We have progressed our business development plans by building on all the reflections generated by you and have a much better understanding of how we as individuals, teams and as a wider network make a difference. The task ahead is how to share this value and use the insight to place the Centre on a secure footing beyond 2021. My tip for your next phase is to stay creative and think like entrepreneurs to learn as quickly as possible about what others less familiar with co-production will want to connect with.

Susan

Now that I’ve finished my degree (hurray!), I’ve decided it’s time for me to spend some time back home in Toronto. I’m looking forward to having some restful time at home before I figure out my next adventures, but it’s hard to believe my time with the Centre is coming to an end but I know this work is in good hands.

Niccola (left) & Susan (right) waving and smiling, soon after Susan started the role

I’ve been avoiding writing this farewell because that means my role is really almost over! It’s been a wonderful whirlwind learning about co-production with everyone involved in the centre since I started working here late last Spring 2019. I’ve learned so much, and have so much more to learn. Thank you for welcoming me into this work, whether by tweeting hello, saying hi at an event, sharing your co-production tips and stories, or reflecting on your hopes for the Centre. So many people and teams have helped me grapple with everything from big questions about power and fairness in co-production, to the daily tasks of how to do our best to collaborate with what we have. I am excited to see how this community continues develop the centre and support each other in getting involved in co-production. I’ll really miss collaborating with you, though I’ll be cheering you on from the other side of the Atlantic Ocean. I’m not posting my personal email online for privacy reasons, but if you’d like to stay in touch or you’ll be stopping through Toronto, feel free to email the Centre (coproduction@ucl.ac.uk) and ask for me. Sappy though it may sound, I may not be here but I know what I’ve learned from this community about the inspiring, challenging and valuable work of co-production will stay with me wherever I go next. Thank you!

Thanks everyone, that’s all for now. We’ll be in touch very soon.
Niccola

Pop along and check out Pilot Project Hearing Birdsong in Dalston!

ucjunhu2 March 2020

For World Hearing Day, one of our Centre Pilot Projects Hearing Birdsong, will be holding its sound installation of British songbird in two locations in Dalston, North London.

  • 12-6.30pm on 2nd-3rd March at Dalston Eastern Curve Garden, 13 Dalston Lane, Dalston, London E8 3DF
  • 11-6pm on 6-7th March at Kingsland Shopping Centre, Kingsland High St, Dalston, London E8 2LX

Image of the Helix Design Centre with the Hearing Birdsong yellow bird boxes displayed in the room (Image credit: James Retief @jretief11)

As you my know, the co-produced project, brings together art, healthcare and science to raise awareness of hearing loss and encourage early identification. Visitors are invited into a safe space to interact with the exhibition and listen to birdsongs emitted from handmade bird boxes. The 5 birdsongs contain frequencies that are similar to those lost with an age-related or noise-induced hearing impairment. Visitors can chose to have their hearing check with the HearCheck by a trained member of staff. More details attached.

Please do pop in for your free hot drink and to experience the installation! No need to book, just turn up and say hey!

Co-production event: Teasing out the Tensions

ucjunhu2 March 2020

This event was planned and delivered as a partnership between public contributors, INVOLVE; Centre for Public Engagement at Kingston University and St George’s, University of London; UCL Centre for Co-production in Health Research; Bridges Self-Management; Department of Design, and Brunel University.

With thanks to Journal Frontiers in Sociology who sponsored the event on 26 February 2020.

This blog is written by UCL Centre for Co-production co-producer and event team member Sarah Markham, thanks Sarah!

I arrived early at the NCVO building on the morning of 26 February ready to help Gary of INVOLVE, to distribute copies of the agenda and co-production materiel on the seats. This felt a good way to embed myself into the event; I had played a role in the design and organisation of the workshop and it felt important to me to be contributing on a practical level on the actual day. It was a beautifully sunny Wednesday morning and the event had sold out. The day felt full of co-production promise.

The term ‘co-production’ has many context dependent meanings, across a range of settings including clinical research and services management, but in general refers to the creation and implementation of projects in which members of all relevant stakeholder groups, especially members of the public, are involved as equals.

In line with the co-production principle of parity of involvement and contribution, when organising the Teasing Out the Tensions event, we had agreed that one of the principles of the day would be that everyone, attendees included, would be responsible for its implementation and success. How this democratic ideal would play out in practice, we had no idea.

Scott sat on a chair with sponsor and event organiser logo’s in the background delivering his opening speech

The event began with a welcome from Scott Ballard-Ridley of Bridges Self-Management who explained what would happen throughout the day and how the it had all been put together. This was followed by a scene setting talk about the challenges of co-production by the key speaker Peter Beresford (University of Essex). The focus of Peter’s talk was strength in complex and difficult times in the context of national politics. Themes included progressive democratisation versus neo-liberal populism, the privileging of traditional forms of knowledge and continuing barriers to involving hard to reach populations. Peter asserted that this was creating distrust in service users regarding the feasibility of co-production. He celebrated the many people who were making robust efforts to actualise democratic involvement and co-production, and the expansion of associated research projects (both national and international). Peter exhorted us to be positive and assertive, and to keep moving forward in promoting the democratisation of policy and services.

Peter sat at front of the room delivering his keynote speech to the audience

Competing ideologies of patient public involvement (PPI) have evolved within the same terminology framework and Peter spoke about the impact of political power on co-production. He claimed that there are serious inequalities to resolve in the arena of co-production and a great need to empower service users and raise confidence in their agency to enact political and cultural change. Peter emphasised the inclusion of all forms of diversity at a level of equal power in participatory activities and this required community development and outreach. Co-production must run through this from the beginning to the end.

Peter concluded his talk by emphasising the need for co-production to include and generate new experiential knowledge and for people to continue to resist epistemic discrimination (prejudice, bias and discriminatory action suffered by individuals in their position as epistemic agents, that is, as individuals who can acquire knowledge, justified belief or understanding). The presentation was then thrown open to the audience for questions and discussion and there was further talk with regard to creation of shared knowledge and learning via the involvement of service users at every stage of social work post qualification and the power of co-production to change culture. The realities of trying to getting involved in co-production project was also discussed, including issue such as identity intersection and impressions of residual disregard for subjective experiential learning.

At this point attendees had a choice of five parallel sessions to attend, exploring respectively tensions in the co-production of publishing, commissioning of health and social care research, acting ethically within co-production, sharing power in a project and co-produced evaluation. There was a focus on discussion and interaction within all sessions (and no PowerPoint presentations allowed!)

Lots of discussion taking place as part of the Ethics of co-production session

Lunch was a fabulous range of sandwiches, rolls, hot wedges and fruit and was alive with vibrant conversation. After lunch a re-run of the five parallel sessions of the morning allowed everyone to engage in their second favourite option. As in the morning, I was co-facilitating the co-production in evaluation ’embracing messiness’ session led by Lizzie Cain (UCL Centre for Co-production in Health Research). Personally the notion of ‘mess’ unnerves me, conjuring notions of unmitigated and incomprehensible chaos. I was anticipating being one of the most challenged people in the session. At the same time I understood that discussing practical means of dealing with ‘mess’ would hopefully allow us all to at least begin to get a handle on the matter. This had the potential to help build confidence (and hope!)

Co-production can be viewed as a disruptive innovation and challenge people to work differently. Lizzie and I had thought it would be useful to mention the potential benefits of ‘tensions’ in the co-production of evaluation. A mutually respectful difference of opinions/ideas/priorities could lead to productive and inspiring debate, possibly leading to the generation of new (shared) understandings and appreciation. I was personally aware of work done (in Tanzania) co-produced with peer workers in which it had been highlighted in interviews that the data collection specification for a service evaluation hadn’t really provided the funders with any meaningful information and had been in effect experienced as a burden and not a meaningful exercise for the programme. We used a discussion of this and similar issues to segue into a discussion of the value of evidence.

Lizzie sharing her thoughts with the group taking part in the Embracing messiness break out session

The notion that tensions could have a positive effect and play a valuable or even necessary role in co-produced evaluation proved popular and creatively provocative for the attendees. Of particular interest was the role that those tensions can play in working towards culture change. Both the traditional research and funding world, and co-producers need to understand each other’s needs and come to some sort of compromise around how and what is evaluated and reported. This is happening – responsible funders are becoming much more aware of the burden their reporting requirements can place on staff.

There was a general discussion about what evaluation is in the context of co-production and the value that tensions can bring; enabling productive discussions which may generate shared understandings. This discussion segued well into consideration of the role of evidence in co-produced research and the importance of context in assessing what kind of evidence is important to collect. We also considered the different reasons why you would evaluate a co-produced project, which audiences would it be relevant to reach, the kind of evidence needed and the extent to which you could co-produce the evidence collection. One participant raised the excellent point that evaluation is only of value if the findings are used and it leads to actionable points and this can be sued to guide the design of the evaluation.

There was recognition that we do need more evidence of the ‘traditional’ impact co-production can have on projects rather than just assuming it does make things better and the complexity of iterative, participatory evaluation. Angela who is also involved with the UCL Centre for Co-production in Health Research shared her experience of co-developing the Hearing Birdsong Pilot Project to raise awareness of hearing deficits with the use of birdsong funded first by Imperial College and more recently UCL. The project had essentially been user-led with professionals becoming drawn in as the project evolved. The entire process had been very organic.

Lizzie gave a clear and comprehensive description of how the UCL Centre for Co-Production in Health Research evaluate the projects they fund with an emphasis on drawing out reflection and learning from the projects including their relations with the Centre for Co-Production and their experience of the evaluation process. Within this there is also the awareness of the need to include more traditional quantitative measures of impact.

At the end of our session I shared my experiences of participating in a co-creation session at the UCL Centre for Co-Production in which we had shared positive experiences of co-production. What had been remarkable was the richness and diversity of experiences of how co-production had impacted on ourselves, the changes it had caused and the actions it had led to as a consequence. Common emergent themes being the importance of connectedness, of learning to understand each other better and the almost infectious nature of co-production.

Tina Coldham (INVOLVE) chaired the final session of the day commenting on the positivity and liveliness of the event and the importance of bringing new (and possibly radically disruptive) ideas to the table. She reflected on Peter Beresford’s presentation; on the multiple uses of terminology and framing co-production in research as collective advocacy. The leaders of the parallel sessions were then invited to come up to the front and give their reflections. Thoughts were expressed regarding the value of lay summaries in academic publications, the importance of addressing issues in co-production due to power imbalances, the need for commissioners to be more flexible in order to allow co-production to actually happen, the need for sufficient time to be allowed within projects for co-production to be done properly, the need to create an open and inclusive culture of evaluation in co-production, and the ethics and practicalities of paying lay people for their involvement in research. Hopefully the vibrant co-production conversations initiated during the day will be continued on Twitter and elsewhere. Check out the hashtag from the day #CoProToTT

More photo’s coming soon!

This event planned as a partnership between public contributors, INVOLVE; Centre for Public Engagement at Kingston University and St George’s, University of London; UCL Centre for Co-production in Health Research; Bridges Self-Management; Department of Design, and Brunel University.

The event was sponsored by the Journal Frontiers in Sociology.

 

Coming up in Co-production – October 2019

Briony Fleming14 October 2019

This blog shares ways you can get involved with the UCL Centre for Co-production in Health Research, and a range of other resources and co-production events.


We love learning more about co-production from the resources and experiences so many of you share! Each month, we’ll post a blog like this where we’ll pass on ways to get involved in and learn about co-production and related topics.

Get involved in the UCL Centre for Co-production in Health Research:

Email Susan coproduction@ucl.ac.uk if you’re curious about any of these opportunities.

  • On Thursday 31 October 13:30-1630, come help us work on our learning and development support for co-producers (West London location). If this would be your first time joining in, here’s what a co-creation session is like!
  • Come explore how to evaluate what we do together as a Centre on Wednesday 27 November 13:30-16:30 (North London location).
  • Are you living with health issues or supporting people who do? We’re looking for two people to join our Allies Group and one person to join SCIE’s (Social Care Institute for Excellence) Co-production Network. Check out these details and reach out by 25 October.
  • If you’re curious about developing a sustainable business model for the Centre’s future, Rachel’s looking forward to collaborating on this so please reach out on coproduction@ucl.ac.uk .
  • Let us know if you’d like to join in collaborating on our blog! You could share a bit about yourself, share learnings from co-production projects, or let us know if you have any other ideas.
  • Send us resources to feature here next month, or tag us on Twitter @UCLCoPro.
A Lego creation entitled “Community” from one of our last events.

Loving this Lego creation entitled “Community” from one of our last events.

Check out these events:

Learning about co-production and more:

Tools.

Oxfordshire co-production programme is launching a co-produced ‘Working Together’ Handbook on October 16 with tips on how to do co-production (though it’s different every time!). Find your copy here.

Blogs/Updates/Articles.

Of course, you can also check out the rest of our blogs!


If you’d like to keep hearing about what we’re up to and what we’re learning at the UCL Centre for Co-production in Health Research, sign up for our newsletter, email Susan coproduction@ucl.ac.uk or tweet @UCL_CoPro.

Feel free to email Susan at coproduction@ucl.ac.uk if you’d like a pdf or word copy of this blog.