The Power of Partnership

Our Top Tips for co-production with inclusive and meaningful Public and Patient Involvement and Engagement 

Posted by Rosemary Nicholls, Patient and Public Involvement and Engagement (PPIE) member, and Charlotte Parbery-Clark, Fuse researcher at Newcastle University and Public Health Registrar

This image was co-produced with members of the public, researchers and film production company Kaleidoscope CFA as part of the UNFAIR research programme. You are welcome to use and share the animation or images whilst acknowledging the source (https://bit.ly/UNFAIRstudy) when doing so. 

Earlier this year, members of the public with researchers at Newcastle University launched an animation that explores public views of health inequalities. The animation was created as part of the UNFAIR project, which is funded by the National Institute for Health and Care Research (NIHR).

Here Rosemary and Charlotte share their experiences as co-applicants on the project and give some top tips for members of the public and researchers.

Rosemary

"A key factor in the success of this project was the leadership style of the professional UNFAIR researchers. Their excitement and commitment to the study and to us as members of the Patient and Public Involvement (PPI) advisory team was infectious. The timely exchange of emails kept us all informed of progress and involved in deciding next steps. There was ongoing respect for what we had to offer.

"I was confident in my views and sometimes doubtful about the practicalities of what was being proposed, thinking: “This isn’t going to work.” But I found various methods much more successful than I expected and I learned through my surprise that I’d been wrong!

"A risk of consulting people in disadvantaged settings is that they may assume that the researchers will be able to effect immediate improvement in their circumstances, so it’s important to be clear from the outset about the aims and likely outcomes of a project and I feel we succeeded in this. The people we met in community groups emphasised how vital it is for them to be treated with respect and I’m confident that we put their needs at the top of our agenda when we asked them questions.

"There were occasions when we had to reassess our approach and resilience became a useful quality. The excellent teamwork that Charlotte and I had developed over previous months enabled us to undertake a successful review of our methods and move forward."

Charlotte

"When the opportunity came up to co-lead the project, I was excited but also a bit apprehensive as I was new to this type of work and was unsure about how to 'get it right'. One thing I was sure of was that I wanted to involve members of the public throughout the project in a meaningful way and avoid it being 'tokenistic'. So, the start of my PPIE journey involved lots of reading and reflecting about how to approach it!

"Co-leading with Rosemary and working with the UNFAIR PPIE contributors was invaluable as we could bounce ideas off each other and consider a variety of perspectives. They kept me right with the 'academic speak' I would sometimes slip into. I learnt so much with so many firsts, such as applying for funding for this type of work (and being successful!), creating flyers, navigating remuneration, as well as being involved in creating an animation."

 

Top tips for members of the public (especially if considering a co-applicant role)

• Applying to be a co-applicant or public contributor can involve being selected from a group of interested people. Don't let that put you off as there are lots of opportunities. The Research Design Service (RDS) including Creating Connections, or People in Research are good places to start.

• Be confident about taking up the role, if you would like to do it. The researchers have asked you because they’re confident you can contribute relevant skills and experience.

• Check that you have the time to commit to being a co-applicant. In terms of hours, the commitment may not be very great, but being able to respond to emails quickly (within 48 hours) and to attend online and in person meetings at arranged times can be important. It’s likely that you will be consulted about suitable times, perhaps by doodle poll, but there may be occasions when you need to prioritise the project to ensure continuity and re-arrange your diary. Ongoing dialogue between you and the researchers to figure out the best approach together works well.

• Each stage of the project will be well-planned and costed in advance by the researchers and the lay co-applicant is paid by the hour in my experience, depending on the nature of the work. However, there may be occasions when lay co-applicants feel that they can offer further insights and they should feel freely encouraged to check that comments outside the box will be welcome and if so, volunteer their thoughts to the researchers by email.

• Be willing to ask questions of the researchers and put your point of view across with confidence, but be prepared to find that your assumptions may be proved wrong as the project progresses. Remember that it’s a learning process for us all. Be resilient when necessary and work together to keep the project on track.

Top tips for researchers

Ways of working:

• Decide how you will involve public contributors at each stage of the project in line with your budget.

• If working with a specific group of PPIE contributors on a project, decide together how you would like to work. There are tools to help you with this, such as Working Together.

Diversity and inclusion:

• Remove barriers for involvement as much as you can. For example, provide options such as different online and/or in-person sessions on different days/times, go to community groups and be flexible about timings to ensure it suits public contributors (not expecting people to come to you), or use online platforms, such as Padlet, for people who want to be involved but can't attend the session.

• Language is really important, be as clear and as simple as possible.

• To increase diversity of public contributors, networks can help promote the opportunities particularly in public health research compared to disease related research as public health research typically has a wider remit.

Time:

• Building relationships is key and takes time. It is good practice to keep people updated and adapt according to need where you can.

• Make sure you know how to remunerate public contributors in your organisation before any PPIE sessions to reduce delays.

• Build in extra project time for unforeseen events.

Challenges:

• Any challenges that may come about with PPIE work or co-production are opportunities to make the project even better, see them as gifts.

• Sometimes, what is feasible in the time/resources available may not align with the feedback so be clear that you may not be able to act on all suggestions at the outset. Compromise as well as sharing why you have not been able to act on certain suggestions is useful. Have a way of deciding what you will do if the feedback conflicts with others' feedback is important.

Involving members of the public is incredibly worthwhile strengthening the project in so many ways. Also, undertaking PPIE and/or co-leading provides opportunities for rich learning and skill development for both researchers and public contributors. There is lots of support especially if this is your first time doing this type of work, as either a member of the public or researcher. To find out more about PPIE or public co-applicants, the following resources may be useful:

Guidance:

• NIHR guidance on PPIE including guidance for public co-applicants and PPIE remuneration
• NENC RDS Public Involvement Guidance
• UK Standards for Public Involvement
• NIHR RDS Community Engagement Toolkit
• Working Together

Opportunities for public involvement:

• Contact your local Research Design Service (RDS); in North East and North Cumbria, opportunities for involvement are available, for example, through the RDS Consumer Panel and/or Creating Connections
• People in Research

 

-----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

Rosemary Nicholls is a Patient and Public Involvement and Engagement (PPIE) Representative and Consumer Panel Member, National Institute for Health and Care Research (NIHR) Research Design Service (RDS) North East North Cumbria (NENC) and one of the UNFAIR PPI members.

We would like to thank the UNFAIR PPIE and research team, members of staff who helped facilitate the online workshop as well as everyone who took part in the workshops.

This project was funded by the Tilly Hale Award from Newcastle University and the National Institute for Health and Care Research (NIHR) (ref CA-CL-2018-04-ST2-010).The views expressed in this blog are of the authors and not necessarily those of the NIHR, the Department of Health and Social Care or Newcastle University.

A public partner’s guide to podcasting

Posted by Victoria Bartle, Fuse Public Partner, with tips for guests from Cassey Muir, Fuse & NIHR School for Public health Research (SPHR) funded PhD Researcher from Newcastle University

Everyone seems to have a podcast these days and there are lots discussing research, but how many can say that they are totally led by the public? I have been participating in public involvement in research since 2016 and believe that it is a vital part of improving everybody’s health, but find that getting other people involved and informing the public about research projects is really difficult.

I was excited to be involved with the Fuse podcast Public Health Research and Me as I’ve wanted to start my own for a while now, and felt as if this would be a perfect opportunity to learn about podcasting and give it a try, as well as being part of creating a platform to help engage the public in research and hopefully increase awareness and involvement. I joined the podcast team made up mainly of other public partners and took part in some excellent training which went through equipment, hints and tips for selecting guests, how to phrase and deliver questions, different podcast formats, as well as recording and editing. I was buzzing after the training and keen to get started.

 

I was lucky enough to be selected to be the first host for the podcast and was matched with Cassey Muir, one of the Fuse researchers who is working with children and young people who have been affected by parental substance use. Her work is fascinating and I was soon enthralled reading everything I could to prep for the interview and come up with a very long list of questions. As brevity is not my forte the rest of the team helped to cut these down to around five or six questions which is about all that you need to create a 30 minute podcast.

We then had a pre-record meeting with Cassey, where we discussed the questions. Talking to her about her work helped me to edit and refine the questions for the interview. Once the questions had been finalised and approved by the podcast team and Cassey, we set a recording date.

I was quite nervous before the record. I’d been a panel member on a podcast before and had so many technical issues that I was really stressed and anxious by the time I managed to get everything sorted. So for this recording I made sure I had tried all of the equipment and was all set up with my notes, drinks, tissues and cough medicine…because of course I had a cold! Recording when one of the presenters keeps coughing is really difficult for the editor, but Cassey was a pro and kept pausing whenever I coughed so that we would have a second or two to edit it out. We talked for ages and the record went really well. I was able to bring in some of my own lived experience of the topic and this helped to make the conversation more natural and less like me firing questions at Cassey, although I did say “wow” and “that’s amazing” a lot which I was determined not to do as much the next time.

Now to the technical part! Although we had had some training on editing podcasts, the team decided to use an external editor as we wanted it to sound as professional as possible, and none of us were confident in using the software just yet. Listening to the edited version we were able to make requests for changes, but I felt that it generally sounded great, and asking to cut out all of my embarrassing “wows” was my own issue and not necessary. We had to write our bios to go with the podcast, an overview of what it was about, and make sure that the projects and references that we discussed were all available for the listeners to link to directly from the podcast page.

Going live was exciting, I sent the link to all of my friends and family, it was tweeted on the Fuse twitter feed and is also on the Fuse website so everyone can access it. We’ve had over 100 listens and the bonus video has had nearly 300 views so far. I’ve had lovely feedback from my friends and family who said they found it really interesting. My Mum was especially impressed as she now has something that she understands to tell people when she’s trying to explain what public involvement in research is and what I do.

Round two  

The second recording went a bit differently. I had loads of background information to read about Eugene Milne, his career history, his involvement in establishing Fuse, his role in public health and his recent MBE which was all very exciting. I had lots of questions about all of the different projects that he had been involved in, their impact on public health in the North East, as well as his plans for retirement, but during the pre-record chat I decided to take a more focused direction as his responses to some of the topics were just so interesting. We narrowed it down to his involvement in establishing Fuse, what his initial expectations were and how he feels it has developed over the past 15 years; the impressive results from the public health initiatives that he oversaw (including North East tobacco and alcohol control programmes Fresh and Balance); as well as responding to Covid-19 during his time as the Director of Public Health for Newcastle.

Again the public partner team reviewed the questions and the theme of the podcast and we went ahead with the recording. This time I didn’t have a cough which made recording much easier, but I still responded with lots of “wow’s” and “that’s amazing” as I found Eugene very engaging and his career so interesting. I then got myself a bit confused towards the end of the record. I’d skipped a question as it didn’t fit with how the conversation was flowing, but I wanted to come back to it at the end. I’d already said the outro lines so I had to pause for a second or two, ask the missed question, and then remind the editor to swap the order of the last two sections around. I was a bit embarrassed about this, but it was absolutely fine and you can’t tell in the final version.

Things don’t always go to plan

The third recording with PhD student Joanne McGrath has been different again. We had already decided to focus on one of Joanne’s current projects looking at women experiencing homelessness as it fitted in with International Women’s Day and an event that Fuse was hosting for the occasion. This meant that I had a bit less reading to do while prepping the questions this time. They were approved by the podcast team and Joanne, and she steered the direction of the podcast from the outset as she knows her research best and which areas are being focused on currently. The recording has been beset with challenges, technical issues, diary clashes and unavoidable life events that have meant that we have had to postpone the recording three times. Is it cursed!?

These challenges actually led us to writing this blog, as well as the hints and tips below. We have all learnt so much from the first three podcasts and as I pass the hosting responsibilities to the next public partner we wanted to make sure that we were learning from our experiences. At the point of writing this blog, we have now managed to record Joanne’s episode, so keep an eye out for it. Her work with women experiencing homelessness is so important and will benefit an often overlooked group of people by supporting positive changes in their lives.

Our top tips for podcasting

For hosts

Preparing for the podcast:

• Give yourself enough time to read through all of the guest’s work and discuss with them and the team the possible theme of the interview.
• Write down all the questions you can think of; you can always edit and rearrange the order later.
• Have a pre-record meeting with the guest; this helps you and your guest to feel comfortable, and to try out the microphone and recording platform. This can also help to define the questions and theme of the podcast.
• After the guest and the team have reviewed the questions and decided on five or six to use, arrange them in an order that should flow like a conversation.
• Write your own intro, a couple of sentences about yourself to introduce you to the listeners and practice this a few times so that you are familiar and comfortable saying it.
• Also practice the intro and outro sections that have already been created, changing some of the words if it fits better with how you speak.

The podcast recording:

• Login to the meeting for the record early, have everything you need set up around you, and make sure you have all devices on silent so you won’t be disturbed.
• Check the mic in advance, you may need a USB port to attach to your computer and headphones with a connector jack. If you use an Apple Mac (or similar) you may have to use a USB adapter.
• Place the mic approximately 15cm (6”) in front of you.
• Find a small quiet room that is preferably well furnished to absorb any echo.
• Have a little chat with the guest, try to make them feel comfortable and start when you’re both ready.
• Mute yourself if you need to cough, sneeze or drink etc.
• Avoid rustling any paper or notes that you may have prepared.
• Turn off non-essential devices using wifi and reduce the tabs/windows on your device. This will reduce the likelihood of buffering during the Zoom/Teams call.
• If you do cough, sneeze or make a mistake then pause for a second or two and start again (or mark by saying “edit point”), this gives the editor a space to remove the noise.

After the recording:

• Re-record any sections you feel necessary, or let the team know if you think a section will need to be moved, cut or edited and they can pass this on to the editor.
• Once the edited version comes back, with the “umms”, “aaahhhhs”, coughs (etc.) removed, you will be able to listen through and request any further edits that you’d like.
• Write a bio and provide a photo to go on the podcast platform.
• Help with any promotion through your own networks, and enjoy listening!

For guests

Preparing for the podcast:

• Identify and share your relevant publications, resources, and information with the host and podcast team, which allows them to focus the conversation and questions (e.g., do you want to provide a wide variety of resources or only those on a specific topic?).
• Help clarify any specific points of interest or themes you would like to get across about your work as this will help with determining relevant questions.
• Pre-record meetings and/or emails are helpful, which can take away some of the nerves by building a relationship with the host or testing out the equipment.
• Ask for a copy of the questions if you would like to make notes and think about your answers ahead of time.

The podcast recording:

• This should be/is a fun experience where you get to talk about your work with someone who is keen to listen and explore different topics with you. It is a great chance to discuss your research in a way that you might not normally and possibly from a different viewpoint, so try to ease into it and enjoy it. If you lose your train of thought or stumble over your words it is okay, that is the benefit of editing and not being live.
• If you have made them, have your notes to hand, either printed (but not rustling) or on the screen to help you remember important points that you want to make during the podcast.
• As this is meant to be somewhat conversational, remember to go with the flow of questioning as some of your answers may spark interesting follow-up questions that you are unprepared for.

After recording:

• Ensure you have provided links to the important items you discussed during the podcast, which can then be shared alongside the podcast.
• You get to listen/watch through the edited podcast before it goes live, which is your chance to highlight any changes you would like to be made (although the editing team do a fab job, so there may be no necessary changes at this stage).
• Once the podcast is live, this is a great opportunity to share your work and the podcast with relevant networks and/or on your social media.
• Enjoy listening or watching the podcast!

My passion for research comes from always asking "why?"

Posted by Pascal Landindome Navelle, FRSPH, Public Health Research Operations Officer and Doctor of Public Health Student at Teesside University.

In today's Fuse blog, Pascal gives his top tips for anyone starting out in research, and shares his own experience which began working with Fuse and Teesside University.

His advice? A passion for the "why?" question and accessing the right mentorship.

As part of the NIHR ‘Your Path In Research’ campaign.

 

After working as a clinician for several years, I felt that my impact on service users was limited. So, upon a thorough reflection, I was inspired to progress into public health research, where I felt I would have a broader impact on society.

Research work is fascinating as it provides a clear pathway to contributing to advancing the knowledge of the disciplinary sector to which I am dedicated. The importance of research should go beyond conceiving theoretical works that would only find a physical location in a library. Research should be "living", circulating, interacting, multidisciplinary, and impacting the environment.

What I enjoy about research is that it allows me to pursue my interests, learn something new, hone my problem-solving skills and challenge myself in several unique ways. Working on a faculty-initiated research project enables me to work closely with a mentor–a faculty member, and other experienced researchers. With a self-initiated public health research project, I can leave the community with a service that represents the distillation of my interests and studies and, possibly, a real contribution to knowledge.

There are many training and support systems that I have found valuable during my career. Researchers usually embark on increasingly diverse careers, where collaboration, networking and interdisciplinarity have become more important. Critical reading, academic writing and critical analysis are valuable training and support required of a researcher. Transferable skills, such as effective communication and problem-solving abilities, have helped me operate more effectively in different work environments.

Starting a research career can be daunting but exciting! The challenge of getting the support needed to achieve my dream came true when I enrolled at Teesside University for a research degree. This began by getting involved with AskFuse (Fuse’s responsive research and evaluation service) and with Associate Professor Dr Peter van der Graaf, working on an enquiry to evaluate Northumbria NHS Foundation Trust’s staff health and wellbeing resources during the pandemic, as part of my PhD research. This then led to working on the South Tees Arts Project (STAR) with Peter, a pilot study to co-produce wellbeing measures with primary school children, their parents, teachers, and artists for a school-based dance intervention. I supported the data collection, analysis and report writing for the STAR project as a Research Assistant and even wrote a song for the engagement activities with children in the research!

I had the opportunity of getting mentorship and some academic resources to enhance my knowledge. I connected and contacted very experienced researchers in the field of public health who supported my interest in growing as a research professional. Through the people I’ve met, I have had the opportunity to work on exciting but substantial research projects that have had a massive impact on the public health community.

My top three tips for somebody starting out in research are:

1. First and foremost, you should be motivated, passionate, and curious about your research topic – do it for science, not tenure! No one ever became a successful scientist with the sole premise of being awarded the Nobel Prize. And remember that plans rarely work out the way you thought they would.
2. Be prepared for a challenging career. Research is ever-changing. Be prepared for the change that research comes with strengthening your problem-solving skills to enhance the fun aspect of research. Problem-solving skills refer to handling difficult situations and overcoming complex challenges. They involve breaking a problem down into its parts, thinking critically about each element, analysing the information you find and using that information to form an effective solution. Having strong problem-solving skills will help make you an asset in your research practice and help you advance your research career.
3. Finally, be proactive, network and connect more with like-minded professionals. Sometimes, the key to getting to places is not what you know but who you know. We can learn a lot from talking to peers and senior colleagues. Attending symposiums, seminars and conferences is a great way to meet people who share common interests with you but have different experiences.

The NIHR has supported my career development through the provision of training, access to leadership development opportunities, networking events, mentoring and guidance on research funding.

The NIHR launched the Your Path In Research campaign this week. Better research leads to better services for the public. That’s why the NIHR want to encourage organisations and social care and public health professionals to play an active role in research, as a way to deliver even better services.

The Your Path in Research campaign highlights how people can make research part of their careers. Some amazing researchers have shared their experiences, how they started in research and what advice they can give to researchers that are considering adding research to their careers.

Take your first step in research today.

Going hybrid: The best of both worlds?

Posted by Helen Moore, Associate Professor (Research), Teesside University

Since 2012 my ability to attend in-person and participate in seminars, conferences and workshops has been significantly reduced. This was partially due to a change in my mobility while I was pregnant with twins twice (!) (2012, 2015), and then after my pregnancies, due to the challenges of arranging childcare for four small children. It has become easier as they have got older, but after my second maternity leave, I returned to work but remained the primary carer for four children under the age of four as their father (my husband), was (and still is) a Merchant Navy captain, which involves working away for half of every year.

Make an enquiry about getting professional technical help as soon as you conceive the idea
 – don’t assume it will be prohibitively expensive

During this time, I had always felt very grateful to any event organiser who took the time to release the slides after their events or, as time progressed and technology moved on, to run an additional online version as this enabled me to participate, albeit in a less than perfect fashion, but I viewed it as certainly being better than nothing. I hadn’t really appreciated how many other people were also often unable to attend events in-person, due to other factors in their lives, but this was brought into sharper focus for me with the Covid-19 pandemic when I started reading, and joining in with, conversations on social media around event accessibility that had never been on my radar.

I’m sure everyone remembers that when lockdowns were imposed, initially events were completely cancelled but as time progressed and it became clear this was not going to be a ‘flash in the pan’, the planning stages of events began to include considerations of how best to run them entirely online, with many people having to rapidly learn and develop skills around using technology to engage with the maximum number of participants possible.

Between January-April 2021, I was part of a team that worked on a project commissioned by the Office for Health Improvement and Disparities (OHID) which looked at the impact of Covid-19 on the hot food takeaway planning regulatory environment in North East England. As the project drew to a close the team thought that this, alongside other work we had been involved in, or were aware of, would make an excellent Fuse Research Event, and my colleague Professor Amelia Lake and I decided we would work together to make it happen.

I was keen to explore the possibilities of having a, in my view, truly hybrid event, where participants could choose to attend in person or via a real time remote video stream, and where presenters could choose to be in the room or present via a MS Teams link. I had previously worked with the team from Teesside University’s Aurora House on other projects, and Amelia had worked with them to create the live stream of her inaugural professorial lecture, so we were confident that they possessed the skills, the technology and the will to ensure this could happen.

It took a lot of organisation to get this to work, and having organised many events pre-Covid, it was definitely more work than if we had decided to run a traditional event with in-person attendance only. I spent significant amounts of time thinking about how we could include the remote audience and presenters in the discussion in the most effective way. The entire event was live streamed on the Fuse YouTube channel, with a technician ensuring that the virtual audience saw a mix of angles and information during the session. We used sli.do to allow the remote audience to submit questions during each presentation, and then one of the organising team asked the questions using the same microphone that was used for questions from the room so everyone could hear.

 

We only had one minor hiccup, in that we used my personal Teams account to allow the external speakers to present, and I forgot to decline meetings that were scheduled to run at the same time – and, of course, the other meeting used the chat function, which meant everyone could read their messages! We managed to get a message to the other meeting and they quickly stopped using the chat function!

As usual, we asked for feedback on the event, and the comments were extremely positive, including the fact it was hybrid, with “Ability to attend online”, mentioned in more than one response.

I would absolutely encourage people to think about making the effort to run hybrid events. it widens your audience and opens up different avenues for discussion – posing a question via an online function is, for most people, less scary than standing up and speaking into a microphone! 

My top tips for running a hybrid event

While I was writing this blog, I thought about what my top five tips would be for anyone considering running a hybrid event in the future:

1. Make an enquiry about getting professional technical help as soon as you conceive the idea – don’t assume it will be prohibitively expensive;
2. Ensure you communicate with the presenters and attendees, before and during the event, about how they can interact and engage during the event;
3. Use interactive apps such as sli.do.
4. Avoid using personal accounts for external events, such as Teams or Zoom (or make sure to decline any other meetings scheduled at the same time!)
5. Always ask for feedback to improve future events.