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Reflections and recommendations on co-producing with young people with past mental health difficulties

ucjunhu9 July 2020

UCL Centre for Co-production co-producers Lindsay Dewa and Anna Lawrence-Jones share their recently launched co-produced research paper and tell us about how the team worked together and all the things that they learnt.  (more…)

It’s not enough to say black lives matter. Time for academia to show it!

ucjunhu21 June 2020

Cristina & Niccola from UCL Centre for Co-production have had numerous conversations over the past few weeks about the #BlackLivesMatter movement, about the need for the Centre to reflect and academia to change its behaviours and how we can all help make this happen.

Photo is of a t.shirt which says – Human Beings, colours may vary – with multi coloured writing (Image credit: Ohh Clothing)

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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)

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

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.

 

Planning the Centre’s Future Together

Briony Fleming11 October 2019

This blog is written by Rachel Matthews about how she’s settling in at the UCL Centre for Co-production in Health research and looking forward to co-producing the Centre’s business model with our community. There’s also some special news from Niccola!


Times flies and the seasonal change in weather is definitely underway. After a few weeks finding my feet I’m really pleased to be joining the Centre and starting the work to develop its long term future. It was great to meet old and new faces at the Evaluation Co-creation Session held on 26 September. The depth of reflection at our discussions in September and the rich knowledge that was shared between us reinforced to me the value of co-production.

Speaking of new faces – exciting news from Niccola! Her son Ishé (pronounced e-shay) has arrived. Both she and him are doing well. Congratulations, Niccola! We’re sending a warm welcome to Ishé from all of us.

Picture of Niccola's babby, Ishe, with his dad

Ishé hanging out with his dad at 5 days old. So sweet!

As I get started with the Centre, I’ve been taking inspiration from a recent trip I took. In June, I visited a not for profit healthcare organisation in the US that provides care with the Native Alaskan population in Anchorage. At the Southcentral Foundation co-production is at the heart of their Nuka system of care which was developed in response to discrimination experienced by the Native Alaskans and to address health inequalities. I took part in their Core Concepts training which everyone completes when they join the organisation. This training develops valuable interpersonal, communication and story-telling skills that are essential for people to work respectfully together and share responsibility. Central to the training are learning circles which help people to connect and build relationships focused on physical and mental wellbeing. This approach could be used for all sorts of topics and issues. I’m curious to see how I can bring what I learned into my work here.

Now that I’m settling in, I’m looking forward to working with our community to plan for the Centre’s future. In the next year we’ll continue developing the long term vision of the Centre ahead of its launch in 2020. One way you can get involved in this is to apply to join our allies group. As a community, we’ll also be working on creating a business model for the Centre that will align with ‘Our principles that we want to live by’(PDF), including sustainability, addressing power imbalances, and being inclusive. If you’re curious about this process and interested in being involved, email me Rachel.Matthews@ucl.ac.uk. I’d love to collaborate on this so I’ll highlight opportunities to get involved as they come up.

There is lots happening between now and Christmas so Susan, Lizzie and I will make sure you are kept up to date with developments and opportunities – starting with those mentioned in our ‘what’s next’ blog.


If you’d like to keep hearing about whatr 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 us  coproduction@ucl.ac.uk or tweet us @UCL_CoPro

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

Help shape the future of the UCL Centre for Co-production in Health Research!

Lizzie4 October 2019

This blog by Rachel Matthews and Susan Anderson shares new opportunities to get involved in the UCL Centre for Co-production in Health Research.

Hi everyone, we’re really excited to be reaching out about three opportunities to get involved with the Centre. Take a look and let us know if you’re interested!

Apply to join our Allies Group

Are you:

  1. A good listener?
  2. Comfortable asking questions?
  3. Interested in health and research?
  4. Living with a condition or disability, or supporting people who do?
  5. Curious about how health research could become more inclusive?

We’re looking for two new people to join our Allies Group from the next meeting – the morning of Tuesday 26 November (central London location). We are approaching an important stage in the life of the Centre as we plan for its launch in 2020 and long term future, and we need your help!

For those of you who haven’t met us before, the Centre is being developed with a network of co-producers. We’re funded by the Wellcome Trust via the Institutional Strategic Support Fund is a 5-year strategic initiative designed to support the co-production of health and social care research. Early on, we co-produced our principles we live by and they shape how we all work together. For us, co-production is about encouraging collaboration and underlining the value of people’s expertise through experience; researchers, practitioners and public work together sharing power and responsibility from the start to the end of a research project. As a member of the Allies group you would be expected to attend Allies Group meetings and Centre events. We will offer support, feedback and learning opportunities as part of our co-producer network and more widely in the UK.

How do I apply?

  1. Read the Allies Group Role Description (PDF – if you would prefer a Word version, please email us on the details below).
  2. Ensure that you understand and embrace the Centre ‘Principles to Live By‘. Still interested? Great! Please read on.
  3.  Write a statement (approximately 250 words/half a side of of A4) telling us about:
    • What interests you about the Allies Group and the Centre for Co-production?
    • What would you like to bring to the group?
    • What would you like to get from being a member?
    • What makes you feel energised?
  4. Email your statement to Rachel Matthews at rachel.matthews@ucl.ac.uk. If you would like to have a chat before submitting an application, please reach out to plan a time. Please note: deadline for applications is noon (12pm) on Friday 25 October. We’ll be in touch with next steps soon after that.

Come to our next Co-creation Session

Co-creators sharing stories and experiences as part of our evaluation co-creation last week

Co-creators sharing stories and experiences as part of our evaluation co-creation last week

On Thursday 31 October, 13:30-1630, we’ll be building on our earlier co-creation sessions to further develop our learning and development support for co-producers. The venue will be in West London, near Hammersmith. Anyone is welcome – some people will have participated in co-creation sessions before, but we’re looking forward to welcoming new people too! Here’s more on how co-creation sessions work. Email coproduction@ucl.ac.uk if you’d like to come.

Opportunity to join SCIE’s Co-production Network

Our friends at SCIE let us know that they’re looking for a new member for their Co-production Network! They’re working with us to open this opportunity up to someone living with a condition or disability, or supporting people who do. If this sounds like you and you’re interested (more information below), please email Rachel Matthews at rachel.matthews@ucl.ac.uk by noon (12pm) on Friday 25 October. At our next event, we’ll draw names from a hat to see who will be joining the network!

What is SCIE’s Co-Production Network?

The Network is a group of people who use services, carers and people from equalities groups who are involved in co-production. They form a group of people that are actively involved in SCIE’s work and is a key part of SCIE’s co-production approach. Its role is to support user, carer and equality groups’ involvement in SCIE and provide a pool of stakeholders which SCIE can work with to co-produce projects and programmes. A full list of current members and more information on the Network is here.

Why join? 

  • Meet like-minded people: find out about other pieces of co-production and social care work and collaborate with new people.
  • A free place at the Co-Production Festival: Once a year SCIE holds a Co-production Festival. It’s a chance to have fun and celebrate co-production and the vital role that people who use services and carers have in improving services.
  • Paid opportunities: SCIE sends network members regular updates about our work and there are paid opportunities to get involved.

 

That’s all for now! Our late November event will be advertised soon, so stay tuned!

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 at coproduction@ucl.ac.uk or tweet us @UCL_CoPro.

Co-producers Sarah, Clement, and Annegret – our thoughts on the UCL Centre for Co-production

rejbsan8 August 2019

We’ve had the privilege of getting to know so many great people through the UCL Centre for Co-production in Health Research, from the start back in 2017, to our most recent co-creation session. We really enjoy working together, sharing ideas about the Centre and collectively deciding upon the way forward. So… this community-building buzz is now coming to the blog! Please email Niccola n.pascal@ucl.ac.uk or Susan coproduction@ucl.ac.uk if you’d be interested in introducing yourself here sometime soon.

For now, Sarah, Clement and Annegret have agreed to start us off, so let the introductions begin!

Sarah Cawthra

No hands! Sarah's smiling at the camera riding a merry go round horse and waving at us instead of holding on.

No hands! Sarah’s smiling at the camera riding a merry go round horse and waving at us instead of holding on.

Tell us a bit about yourself: I came to London in 1991 and am still not tired of its history, architecture, museums and parks. I enjoy reading historical fiction; watching films; and trying new crafts, though my skill lies in baking cakes!! I have volunteered for 8 years, including at my local hospital and community centre, and currently as a Healthwatch Camden Trustee.

Why are you interested the Centre development and co-production more generally? Getting involved in co-production can be for everyone, no matter what you do, your background, or anything else. We all have something to contribute. People encouraged me when I didn’t know if I could do it. Now, I love seeing people realise what they’ve said is equally valid as someone with an academic qualification.

I wonder how we can be brave as we take the Centre’s work forward. To change systems and how things have always been done, we must engage with as many different people as possible. The Centre should ask for their ideas and be brave enough to implement some of them.

What are your hopes and dreams for the Centre? Rather than trying to be the best or biggest, I hope the Centre focuses on keeping to its core values as it grows. So far everyone’s welcomed different opinions and experiences. It is about embracing the journey – both the setbacks and successes.

Are there any areas that you think that may be a challenge for the Centre and that we need to focus more on going forwards? Long-term funding and changing trends are the main challenges, so the Centre needs to be adaptable. Universities can also be intimidating for many people and I would love to hear more from young people beyond universities with different life experiences. I wish that I had been encouraged to share my experiences earlier, but I am making up for that now!

Clement (Ka Ming) Cheung

Clement visiting us at the Centre. He's smiling at the camera making a thinking pose!

Clement visiting us at UCL. He’s smiling at the camera making a thinking pose!

Tell us a bit about yourself: I’m a student at The Bartlett UCL Faculty of the Built Environment (the part of UCL studying how to create all kinds of places for people – from buildings to cities to parks). I’m doing the Masters of Science in Health, Wellbeing and Sustainable Buildings, so that’s why I’m interested in health research in a social setting. I think it’s good to work with the community to understand what people’s needs are and how my research can better address their needs rather than me just doing my own separate research.

Why are you interested the Centre development and co-production more generally? Because I want to do something that’s really relevant for others and co-production is a good way of doing that. We need to ask the people using the service or who is affected to let the researchers know what is going on and how we can do research for them. As for the Centre’s progress, I am interested in how the Centre can show funders the progress we are making so we can work on making the Centre more sustainable in the long-term.

What are your hopes and dreams for the Centre? I hope the Centre can support long-term projects by establishing strong network with the community, researchers, practitioners and different people with different backgrounds so the Centre can co-produce something that’s good for health and wellbeing. My hopes and dreams are that the Centre can get sufficient funding to do projects and make things happen without lots of financial constraints.

Are there any areas that you think that may be a challenge for the Centre and that we need to focus more on going forwards? We are doing some great work that involves many people, but many don’t know about the Centre and how they can be involved. It would be great to have better promotion so people know about it and how they can contribute to different projects and add value to the Centre.

Annegret Dahlmann-Noor

Here's Annegret at our event in July. She's at a table ready for co-creation activities with notebooks, Play-Doh, stickers, and Lego.

Here’s Annegret at our event in July. She’s at a table ready for co-creation activities with notebooks, Play-Doh, stickers, and Lego.

Tell us a bit about yourself: I am a children’s eye doctor at Moorfields Eye Hospital in London. I enjoy working with children and asking for their opinion on how we should run clinics and research projects.

Why are you interested the Centre development and co-production more generally? I have only recently heard about co-producing research with children. It seems very ambitious to me – to share power and make decisions together?! But I’m game! I have run sessions with children and young people, and have always been very impressed with their thoughtful reflections and contributions – and with their enormous creativity and enthusiasm! The Centre has adopted one of my colleagues’ project as a Phase 1 Pilot project. The input from the Centre has helped us a lot with setting up a Young Person’s Advisory Group for research at Moorfields.

What are your hopes and dreams for the Centre? Recently I attended a workshop run by the Centre (more about this event here!). I loved how everybody could exchange experiences and give and receive advice. I hope that the Centre will continue to flourish as an information-exchange place, so that we all learn from each other as we embark on the journey of co-production.

Are there any areas that you think that may be a challenge for the Centre and that we need to focus more on going forwards? Funding is always a limiting factor. I hope that the Centre will find a way to be sustainable, and draw on resources from core and grant funding.

So lots more work for us to do, particularly in relation to securing funding and long term sustainability for the Centre but there is still plenty of time! And… have a read of the ‘What’s next for the Centre blog’ where Niccola & Rachel talk about plan’s for the next few months.

Feel free to say hi back in the comments and or add your thoughts, and stay tuned for more co-producer profiles soon! If you would like to be featured in a future newsletter you are very welcome! Feel free to email Niccola n.pascal@ucl.ac.uk or Susan coproduction@ucl.ac.uk.