Friday, 30 June 2023

One size fits none, watch your language, and keep pondering...

Insights from the Integrated Community Care to Promote Healthy Ageing event

Posted by Hamdi Hamzah, Research and Evaluation Coordinator with NECS Research & Evidence

It was my first time attending an event that saw people (some of us dressed in red) from across different professions – academics, healthcare professionals, voluntary, community and social enterprises (VCSE) professionals and members of the public – come together to share common interests and explore future opportunities or collaborations.

Being new to the health and social care sector and a career changer with experience working with large corporations through strategic human resource roles, the Integrated Community Care to Promote Healthy Ageing event co-hosted by Fuse introduced something that I felt was closer to what was happening on the ground, especially when research and practice interweave. From this event, I have identified seven insights that I felt were worth sharing.


But first... what exactly is Integrated Care? The NHS England website describes Integrated Care Systems as: “…partnerships of organisations that come together to plan and deliver joined up health and care services, and to improve the lives of people who live and work in their area.” They also provide a helpful video explainer.

So, on to my magnificent seven:

1. There is no “one-size fits all” approach to care


Throughout the event, this was a common theme from both presenters and attendees, who continued to stress the importance of putting individual needs at the forefront in providing care. To echo Dr Bethany Bareham (pictured right), Fuse Associate and NIHR fellow at Newcastle University through her talk on providing support to older adults with co-occurring alcohol and mental health problems, support for one individual may not be needed for someone else.

2. Similarly, there is no one way to answer a research question

The event brought together different questions, methods and groups of people to enhance our understanding of promoting healthy ageing. For example, a video presentation by Dr Vanessa Davey, a Research Associate at Newcastle University, on the feasibility of developing a data set in care homes to assist in care delivery and commissioning decisions was eye-opening. You might think that digital GP records could readily be used in one form or another to build this data set, but it is clearly not that straightforward as data from other systems, namely social care, could (and should) provide additional insights into this dataset. Most importantly, while we might take different approaches and target different populations, we are all aiming towards achieving the same goal.

3. Language can have an important effect on how we approach a question


Simply put, are we talking about the same thing? We might think that the terminologies that we are using are similar but they could mean different things to different people. For example, Dr Dan Cowie (pictured right), clinical lead with the North East and North Cumbria (NENC) Ageing Well Network (who also spoke about the Frailty iCARE platform) posed the question: are "personalised care," "personhood" and "person-centred" the same thing for the groups of people that researchers are interested in studying? How we phrase the topic we are researching could also help or hinder what we get out of our work.

4. Co-production of research through VSCE organisations

Local communities should be involved in every activity within the research lifecycle, such as research planning, analysis and dissemination, and not just during the delivery stage of the study – an opinion shared by Greta Brunskill from Voluntary Organisations' Network North East (VONNE) in one of the workshops. Patient and public involvement (PPI) is a useful platform to involve members of the public and co-produce research, but there is the risk of “professionalising” these platforms, which may lead to voices from certain communities not being heard.

5. But what about before we reach a specific age?

There was interest from the audience in exploring personal and environmental factors before someone even reaches a specific age. The idea of testing the impact of, for instance, universal basic income among young people on healthy ageing was food for thought and suggests that a lot of where we are now or – perhaps will be in the future – could depend on factors in the present such as lifestyle, socioeconomic status and access to relevant services.

6. Addressing health inequalities remains challenging

Expanding on points 4 and 5 above, health inequalities remain a hot topic in this field of work. Access to care, health literacy (a person’s ability to understand and use information to make decisions about their health), personal qualifications and involvement of underserved communities were mentioned by attendees either during the talks or workshops as challenging areas. Introducing care or support may not work if barriers to accessing care remain.

7. Keep pondering

The entire event not only provided the opportunity to know what research is being conducted but showed the tremendous volume of research questions left to be explored! One of the themes that came out of Tania Jones' workshop on maximising the use of pharmacy services was the bigger role that they may play in primary care, especially in 2026 once pharmacy graduates enter the job market with prescribing qualifications. This could in turn lead to more questions, for example, is there an inclination for pharmacists to prescribe pharmaceutical over non-pharmaceutical treatments?

While the possibilities are endless, identifying questions that are crucial and impactful may be the first step to starting a research journey and finding the right collaborators. Regardless, we should continue to think about things that we are working on, as Lesley Bainbridge (pictured right), clinical lead in the NENC Ageing Well Network, quite aptly put it, "Some of the best research questions come from what we ponder."


Images: provided with thanks to NHS NECS Research & Evidence Team

Friday, 16 June 2023

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)
  • 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:
Opportunities for public involvement:
 

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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.