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Meet the team: Collaborators for Capacity in Patient & Public Involvement

Also:

  • Lynne Stobbart, Senior Research Associate, Institute of Health & Society
  • Joanne Lally, Senior Research Associate & RDS Research Methodologist, Institute of Health & Society
  • Dave Green, Patient & Public Involvement contributor
  • Joan Bedlington, Patient & Public Involvement contributor
  • Rosemary Nicholls, RDS Consumer Panel member

Meaningful patient and public involvement (PPI) is core to ensuring that research evidence and service improvements are relevant to those they impact on. PPI contributors require support to enable effective fulfilment of their involvement roles, but much available training has been developed from the researcher/improvement community perspective.  We found this problematic as it often does not match the needs of PPI contributors.  In a previous small budget but BIG outcomes study we worked with a range of people who get involved in our research and service improvement projects, to develop a framework of support and training for PPI contributors that reflects their needs. During a public consultation on our innovative framework we further worked with PPI contributors and colleagues from our local research/improvement community to populate the framework with ideas for PPI-relevant resources, courses and events.  In addition to the support and training framework, our work also resulted in the co-design of an on-line PPI Peer to Peer Support Forum https://www.voice-global.org/groups/patient-public-involvement-peer-to-peer-support-forum/. This forum aims to build capacity in the PPI community by facilitating learning and sharing of best practice amongst PPI peers.  Members of the forum can interact with each other by posting questions or group discussion topics.

Despite limited resource we achieved A LOT with our foundational work, which reflects our collective passion, enthusiasm and dedication to making involvement as accessible and meaningful as possible for PPI contributors.  Many of the support and training needs identified by PPI contributors within this work focus on empowerment, relationship building and effective interactions, and relate to the training of professionals as well as PPI contributors themselves. We will build on this work to co-develop a suite of capacity-building resources that have broad benefits for both PPI contributors and the research or improvement professionals they work with.  Project team members contribute to local training and support for researchers and improvers on PPI, and are therefore aware of attitudes, misconceptions and concerns within this community.

Shared-learning events that bring the two communities together to develop aspects of support and training activity will be a key component of our proposed programme of support.  The aim is to overcome mutual tensions and concerns that inhibit truly collaborative PPI.  We also wish to make the support and training that we develop as widely accessible as possible to the wider patient and public population, via a broad range of media.  This is essential to begin to address the current lack of diversity amongst the PPI community.  Maintaining our co-production approach we will work with all relevant stakeholders to co-create a programme of support and training, and a suite of related resources.

Our suite of resources will include structured induction sessions, a taught programme delivered jointly by PPI and research and improvement professionals, fun and interactive learning events, self-learning resources, online/you-tube tutorials, and processes that enable peer-to-peer learning. We will explore development of an on-line MOOC.  Resources will be developed that support and benefit patients and members of the public who get involved with our work, and the professionals they work alongside, to fulfil their involvement roles to their full potential.

We work collaboratively across several sectors encompassing academia, NHS – including NIHR infrastructure, and voluntary, community and social enterprise. For example, we work in collaboration with the NIHR Research Design Service, Clinical Research Network, and Voice. Further, the North East Network ‘Creating Connections’ will provide a network and a platform for the proposed development. Our plan is that the co-developed training will be openly available to all, thus maximising reach and impact.  We will develop monitoring and evaluation tools to capture engagement with the training, as well as feedback on its perceived impact on learning.  We will also develop mechanisms for capturing the growth in capacity and capability in PPI skills and practice for both PPI contributors and the research/improvement community.

We will invite input from the Q community in developing our programme of work. As the proposed programme of co-development of resources progresses it will be invaluable to have experienced members of the Q community test and comment on the early drafts. In turn, the resources we develop can be shared through the Q community for wider use and Q community members will have access to our extended networks which may facilitate further collaborations. 

How you can contribute

  • 1. We would value your reflections on our idea
  • 2. Can we improve it?
  • 3. Is anyone else developing similar resource for building capacity in PPI?

Comments

  1. Guest

    Marta Bourne 2 years, 10 months ago

    This is an excellent idea! I manage a variety of research projects for Prof James Shaw and I think what you are proposing would provide invaluable tools for researchers, clinicians, patients and other members of the public, helping to encourage the growth of PPI and allowing for a more effective public and patient contribution. In particular, extending the PPI reach to include online media such as your YouTube tutorials and Forums will surely have a positive impact on getting a wider population range involved and help create a link between different communities. One of the projects I work on, the Innovate UK funded Northern Alliance Advanced Therapies Treatment Centre (NAATTC), will reach across the whole North East of the UK. I can see how what you are proposing would help facilitate the collaboration of the diverse communities within and allow for a more unified, structured but still flexible, effective and open PPI.

    1. Hi Marta and thank you for your supportive comments! It was great to meet you last week and hear about the NAATTC programme.  Wont it be fantastic for us to be successful in this funding bid and your new PPI network be one of the first cohorts to benefit from it?  Here's hoping!

      Susan

  2. Guest

    Lisa Robinson 2 years, 10 months ago

    This sounds like a incredibly valuable and worthwhile project. Any research or service improvement work I have been involved in has been considerably strengthened by the involvement of patients and members of the public, so anything that builds capacity in this area would be hugely beneficial. The Team in Newcastle have a strong track record in this field, with established networks and infrastructure. I wish them every success with this project and look forward to hearing more about the project as it continues to develop.

    1. Hi Lisa and thank you for your very supportive comments and best wishes for the success of our funding bid!  We agree it will be an extremely worthwhile investment.

      Susan

       

  3. Guest

    Tom Wooldridge 2 years, 10 months ago

    This is an excellent idea which, as it seeks to build on your previous work with PPI contributors, is a great example of PPI in action. The desire to address support and training needs identified by PPI contributors themselves strengthens your proposal. Given recent advances in technology are likely to continue apace, your multimedia approach to delivering your “suite of resources” is the way to ‘future-proof’ said resources so they stay up-to-date and relevant.

    Your ethos of “co-development” and your collaborative working across multiple sectors and organisations is to be commended and will benefit all those involved. I am aware the Clinical Research Network is also looking at providing PPI support and resources so it is good to see the CRN as one of your collaborators.
    You seem to have covered all the bases in this proposal, I can’t see any glaring omissions. Your work will be beneficial to both researchers and research participants and I wish it every success.

    1. Hi Tom - a quick thank you for your supportive comments!   Really like your thoughts about 'future-proofing' - that will definitely go a long way to helping the sustainability of the resource we develop

      Susan

  4. Guest

    Nicki O'Brien 2 years, 10 months ago

    This is a really important and much needed piece of work that will benefit current and prospective PPI contributors allowing them to be better informed and equipped about their role. The work will, in turn, benefit researchers, health professionals, providers, commissioners and policy makers by ensuring that health research is informed by the needs and views of patients and the public.

    1. Hi Nicki - thank you for your supportive comments. It will be great to roll this out for our PPI community - as you say it is so important for them to feel and be fully equipped and informed about their role.

      Susan

  5. Guest

    Justine Smith 2 years, 10 months ago

    We very much need this resource to support our work with Patient Research Ambassadors and lay representatives on our governance committees. Currently we don't have access to any training for the growing number of patients and the public who wish to learn more about the many ways you can contribute to research, over and above being a research participant, and helping us to raise awareness of studies and their outcomes.  We also need to grow the confidence of our volunteers, to support them to take on lay representative roles on our and other NIHR partner's panels, working groups and committees.

    We have been in discussion with a group in the local council who are tasked with improving access to healthcare for BAME populations, who gave agreed to do some videos on good practice when working with these communities, which would nicely fit in with this work.

    1. Hi Justine and thank you for the comments and the support!  We agree that this is a much needed resource and are sure it will be well received by all concerned with PPI. Looking forward to your involvement in this work if we are successful and your involvement in finding alternative funding if not!

      Susan

    2. Guest

      Caroline Kemp 2 years, 10 months ago

      And also improving and promoting best practice ..raising awareness and standards much needed..this can help and support others and help guide the way. Many people are looking to make things better but unsure how to. Everyone wants to provide the best service.

      Videos are also accessible and a good learning tool.

    3. Guest

      Caroline Kemp 2 years, 10 months ago

      Totally agree here as training  is crucial. The use of videos for BAME population is just what is needed and will be a powerful way of making their voices heard and increasing diversity and a step towards better equality.

  6. Guest

    Irene Soulsby 2 years, 10 months ago

    Yes, it's a great idea.  I have participated as a PPI.  It can be a daunting first step, not knowing what is expected of you and having the courage to participate.  I would welcome some training "first steps", make it short, fun and interactive.  I think it's important to have some education but not too much, don't lose the essence of why you are participating.   It's the most fantastic feeling that PPI can make a difference to a project and I have found it to be very worthwhile.

    1. Hi Irene and thank you for your supportive comments.  You have made a valuable contribution to this work already and know the benefit it will bring to yourself and your PPI peers.  Lets hope we get that dosh so we can really move forward in populating our support and training framework!  Look forward to you being part of that.

      Susan

  7. Guest

    Dr Shona Haining 2 years, 10 months ago

    Building the evidence base is crucial for quality services to be commissioned by decision makers and improve the care for patients  and the population .For this team to do this in an innovative co -development means is most welcome and to be strongly supported .Building the capacity within the whole health system to develop and use evidence is ongoing and to have this approach with patients and population is so timely and important . The approach that the outcome of this will be ongoing evaluated to learn is appreciated as is the desire to make this widely available afterwards  .This team have  demonstrated  their skills and passion to develop and deliver  this project

    1. Hello Shona and thank you for very supportive comments on our idea!  It would be fantastic to get this resource off the ground.  Very difficult to maintain a consistent pace of development without proper funding to the work.  Hopefully we will be successful in this bid and then we can really get the co-production ball rolling!

      Susan

  8. Guest

    Greta Brunskill 2 years, 10 months ago

    As a clinician who has recently begun a full time research role, I am really heartened by this project's focus on increasing the capacity of both the public and professionals to get the most from PPI in research. In my previous roles, those using services have often seemed lacking in confidence when invited to get involved in research that they could really contribute so much to.

    I think involving members of the public in the delivery of training is key to help break down potential barriers to people getting involved, including sharing example stories of people who have been unsure or nervous about getting involved in research themselves and what their experiences have given them. Giving people a 'taster' of tasks / roles they could get involved in may also help de-mystify what PPI is, and giving people the opportunity to try out new skills and knowledge in a safe way with space to reflect on new experiences to help assimilate learning.

    As a researcher I am also excited about the prospect of resources to increase my knowledge and skills in PPI, and would be happy to help with any pilots involved in the project.

    1. Hi Greta and thank you for your supportive comments.  Couldnt agree more about the role of PPI in delivering teaching and training.  We also see the value in joint training sessions for PPI and professionals, especially where working together in this way is new for all involved.  Great suggestions about the taster sessions and role play, we will definitely draw on those ideas.  We also think a little injection of fun can go a long way to help break down barriers and build relationships - one of the outputs of our earier work was a prototype board game with a serious twist to it.  We hope to develop that as part of our suite of resources :)    Thank you for your offer to be part of our pilot work - we would be delighted to have your help with that!

      Susan

  9. Guest

    Jane Greenaway 2 years, 10 months ago

    Great idea  to provide structured, relevant and consolidated training and support to this group of individuals. Having recently appointed a Patient Research Ambassador in our Trust  it's often difficult to identify relevant training and support. Lots of different groups are grappling with effective PPI involvement so having the resources in one place to support all PPI / PRA individuals would be invaluable. Jane, R&D Manager

    1. Hi Jane and thank you for your supportive comments.  It really is reassuring to hear how our idea has such broad relevance and appeal.  Your point about having a central resource or platform for good quality, relevant and accessible support and training is so pertinent.  Our aim will be to have such a platform but one that also incorporates an interactive facility to promote shared learning, peer support and the growth of best practice.

      Susan

  10. Guest

    Joan Bedlington 2 years, 10 months ago

    Excellent work - the value of PPI cannot be underestimated. Your proposal to offer support and training to everyone involved in research is to be welcomed. Having a mutual understanding of the roles and expectations of stakeholders can only lead to improvements in the quality and value of research.

    1. Hi Joan and thank you for your supportive comments.  We couldnt agree more about the importance of shared expectations and mutual understanding of roles and purpose.  Really looking forward to working with you on this project!

      Susan

  11. Guest

    Louise Thomson 2 years, 10 months ago

    I think this is an excellent project and agree with so many comments I've read here about the importance of coproduction between members of the public, clinicians and researchers in improving healthcare and in particular NHS services. PPI is vital.

    I am encouraged in particular by the stated aim of increasing diversity but  I imagine there is a long way to go before achieving this?  I have been involved in research, health service evaluation and PPI for some years now and suspect even the term PPI would probably still stump many people I know! The language understandably used in this forum, for example, capacity building, the improvement community, MOOCs etc..might be off-putting to outsiders. I'm aware as a member of the Research Design Service Consumer Panel how important the choice of accessible language is. I suspect one of the ways to increase diversity will be to make sure jargon is avoided or at least explained clearly from the start.  Of course, even members of the public can slip into jargon once they get involved in PPI and that can possibly be one of those barriers to broadening participation or sustaining involvement that needs addressing constantly. Hopefully the tools provided will encourage wider participation. Excellent that you plan to use a wide range of media.

    I fully support this project and am sure it will provide useful resources for people all over the country, many of whom work in isolation. Perhaps this will lead to more interaction between groups working on similar projects so we can all learn from each other? It appears the project is envisaged as an ongoing process continually developed with feedback from those being trained, as it is described as a framework not just as an end-product?  I certainly get the impression from work already completed that it can be a success.

    1. Hi Louise and thank you for your support and comments on our idea.  You raise important points around increasing diversity and making the language we use more accessible to faciliate that.  We agree wholeheartedly, and there are many other things we can do to make involvement more accessible, not least being more creative and innovative about how we go about PPI.  As a team we have already started to generate out of the box thinking around this and our bid will include novel ideas for how we will 'take' PPI to the public.  We look forward to sharing those ideas with you at some point - and perhaps also your involvement in the development and testing of our support and training resources.

      Susan

  12. Guest

    Dawn Hodgson 2 years, 10 months ago

    Hi - some years ago I worked on the Regional  Skills for Life Volunteer Tutor Training Programme; this basically was a task to produce simple, effective learning materials and a suite of delivery modules, which would support the needs of volunteer tutors in the North East. This model and the resouces were so sucessful it was adopted nationally and eventually stood independently as well becoming integrated into national educational curriculum development. It strikes me that this proposal has similarities. I beleive it is crucial that 'ordinary lay-people', with genuine interest are encouraged into supporting professionals, sharing ideas and offering their individual and community of interest expertise. These volunteers are most often the best, most cost effective  and easiest medium to allow  messages/documents/principals to be translated from 'the professionals'/medical/research/technical jargon to the public. I would be extremely hopefully that this project is fully supported and that the benefits of the project fully recognised.

    1. Dear Dawn - thank you so much for your extremely supportive comments.  I am very interested in the comparison that you see between what we are hoping to achieve and an already successful model of support and training delivery in a different context.  I would very much like to learn more about the Volunteer Tutor Training Programme, so will look into that - we are keen to avoid reinventing wheels and to learn from success.  Thank you for bringing that to our attention.  Is the programme or information about it publicly accessible?

      Susan

  13. Hi Susan - we have shared interests in this area - I wish this project proposal well and look forward to getting involved at some point.

    1. Hi Claire - great to hear from you!  Yes, we do have shared interests here and it will be great to connect with you if we are successful in our Q-funding (but great to still do that if we are not!).  We will be approaching Q-members throughout our planned project to help us draw on broad expertise and PPI experience in the development of our resources.  Look forward to you being part of that!

      Susan

  14. Guest

    Caroline Kemp 2 years, 10 months ago

    As a PPI panel member I feel this is invaluable research. To become involved in research in a meaningful way people need support and training. Having guidance around this would encourage more people to be involved and stay involved and would also give researchers a structure to show them the best way to have PPI embedded throughout the research. The best outcomes and richest research findings lie in quality PPI.  Having a plan and structure will also help address diversity so other ways can be found to reach the hard to reach minorities and give them a voice.  Also the whole question of ethics has to be well considered so PPI is incorporated in the most sensitive and respectful way. As panel members we are often asked by researchers how to do effective PPI so pulling together best practice and having guidance is a welcome resource for the research community and also the public to ensure better uptake.  In this way people could engage effectively sharing their knowledge and experience  and not merely  being regarded as tick boxes.

    1. Dear Caroline - thank you so much for this supportive and insightful comment on our idea.  It is exactly the sort of reflection you provide that has shaped the foundational work underpinning our proposal.  You express so clearly how meaningful PPI can only be achieved through a genuinely collaborative approach where PPI is embedded throughout the process.  PPI has been a learning curve for everyone (well that's my experience anyway!) - researchers, improvers and those who get involved alike - this is why we need to work and develop our expertise in that together.  The people who get involved in our research and improvement endeavours bring a wealth of knowledge and expertise that is often not utilised - such a lost opportunity for 'doing' involvement differently and quite possibly more effectively.

      Susan

  15. Guest

    Yitka Graham 2 years, 10 months ago

    This is an innovative application which clearly articulates the need for maximising the role of PPI contributors in clinical research and sets out a structured, patient-friendly pathway for involvement, so PPI is not tokenistic, but meaningful.  This has potential to be generalizable across a wide range of clinical research and provide education and insight to researchers and clinicians who conduct patient-focused research. As  a Q member and cognisant of the aims and ethos of Q and the Health Foundation, this proposal is firmly in line with this approach.

    1. Dear Yitka - thank you so much for your support of this idea and your very insightful comments.  We agree wholeheartedly that our initiative has great generalizability as it focusses on building capacity and capability in involvement - and much of this depends on developing interactional skills and self-confidence.  Skills such as these are transferrable to a range of situations both within and outside of the PPI context.  A further key thing about the approach we are proposing is that there is sufficient flexibility in the framework we have developed that allows elements of the training and support processes and resources to be tailored to particular models of PPI and to specific improvement and research topics.  This is an essential feature since PPI is not one thing so there can be no one-size-fits-all model for the delivery of support and training - so very important for broad relevance and applicability.

      Susan

       

  16. Guest

    Anything that helps us as PPI members be more effective contributors has got to be a good thing. Looks like a no-brainer, especially if it's going to widely available.

    1. Dear Mike - thank you for your comment and support for our idea.  We certainly hope that we achieve our funding aim so that we can take our idea forward and get these resources reaching PPI far and wide!

      Susan

  17. Guest

    Colette O'Kane 2 years, 10 months ago

    I have been involved in PPI as a clinician and change professional in the NHS and as a health care consultant. In my experience, preparation and training is critical to create a level playing field and help to facilitate real change.

    A systematic approach to support patients and public to contribute does not exist. Having a suite of accessible products available that work would be of immense benefit to clinicians, patients and public committed to improving quality in health and care service delivery.

    1. Hi Colette - and thank you for your supportive and helpful comments on this idea.  It is very reassuring that you, and indeed other professional colleagues leaving feedback on this page, see that the resource we plan to build has such relevance and value to all involved in improvement work.  We agree that our idea fills an important gap in the approach to and consistency of support and training for PPI.

      Susan

  18. Guest

    Chris Richmond 2 years, 10 months ago

    As a long time member and contributor to the PPI group at ScHARR in Sheffield I feel that this type of resource can only help the PPI community. In doing this it will help them to support and critique valuable evidence.

    Looking at the links that have been shared it would seem that at present, and as a starting point it would seem appropriate for the group that it is aimed at.

    As far as I am aware there is nothing similar being developed, but I think that there are many PPI groups that would benefit from it, as long as they can maintain their impartiality from the institutions that they support.

    1. Dear Chris - thank you so much for your thoughtful comments on this idea and your support for the resource we are aiming to develop.  We really do feel that having this support and training available could go a long way in strengthening and widening a connected community of PPI.  One of the triggers for this work was the realisation within our small researcher/PPI group that there were others like us - even in the same building - who didn't necessarily interact.  We saw this as a massively missed opportunity for peer support and shared learning - so we mobilised to change that and now here we are!   One of the great things about our idea (and I wont hide my bias :)) is that what we develop will be freely accessible, and to both the PPI community and the research/improvement community.  Collaboration and sharing - all essential for scaling up!

      Susan

  19. Guest

    David Forrester 2 years, 10 months ago

    The only way to improve patient experience is to listen to patients who have previously been involved. This can have very specific beneficial effects. The work McMillan is undertaking with the Northern Cancer Alliance on the patient voice to try to improve NHS cancer pathways is a case in point. Patient experience is used as the basis for identifying where improvements can and should be made.

    1. Hi David and thank you for your feedback on our idea.  Enabling the voice of patients and public contributors within the improvement and research involvement context is a core driver in our efforts to build their capacity - not only in terms of knowledge and understanding, but also in terms of confidence and capability.  We also need to enable the PPI voice to be heard - so its also about helping others (researchers, improvers) to understand the value of listening to, learning from and acting on the patient voice.  We think our PPI-driven approach to creating the conditions for shared learning and training will be so valuable in this respect.

      Susan

  20. Guest

    Bronia Arnott 2 years, 10 months ago

    Meaningful and appropriate involvement of patients and members of the public in the research cycle is crucial to ensure the findings of the studies are of relevance to those who are affected and also to create impact. I work with researchers developing research studies who are keen to involve patients and the public but do not always know the best way to support them and how to get the best from them. A suite of resources which can facilitate public and patient involvement in research would be hugely beneficial. Developing and delivering these resources in a collaborative way will guarantee that they have maximum utility.    

    1. Hi Bronia - thank you for your support of this idea.  It is really reassuring to hear how so many different people see the benefit in the proposed support and training we plan to develop, and not only for PPI but also for researchers too.  You can't be more right about the importance of collaboration in developing and delivering these training resources - an absolute key to success in our opinion!

      Susan

  21. Guest

    This project is fully deserved of support. In my two years as a member of RDS NE Public Involvement Panel I have seen how invaluable the public's involvement has been to researchers.

    PPI training will further enhance the quality of that involvement and increase the knowledge and understanding of all participants.

     

     

     

     

     

     

    1. Hi Jim and thank you for your support of our proposal!  I can speak for our wider team to say that we absolutely agree with you that better understanding and knowledge has great potential for improving the quality of PPI, and, ultimately, our research.

      Susan

  22. Guest

    Louise Hayes 2 years, 10 months ago

    Sounds like a really worthwhile project. I am involved in research design and it is hugely helpful to have have PPI in study design, as well as the running of the study. I would imagine that many people who might want to get involved with PPI and have lots to offer might feel intimidated and nervous about 'taking the plunge'. Supporting people to get involved initially and providing ongoing support with appropriate training is a great idea.

    1. Hi Louise

      Thank you for your supportive reflections on our Q-idea!  You are so right that people who are really motivated and interested to get involved in research are often a bit reticent because they don't know what to expect and can lack confidence in their own skill set and knowledge.  As you say, it is very important to provide a framework of support around that to help them gain that confidence and capability.

      Susan

  23. Guest

    Mrs Rosemary Nicholls 2 years, 10 months ago

    As a member of the RDS North-East Consumer Panel, I think this is an excellent idea. It would be wonderful to make some videos of PPI sessions with researchers, perhaps with us playing roles and after seeing them, comment could be made by the researchers and the viewers on the contributions which were really useful and which not. Role play could make it easier to make critical comment.

    I think there is scope for sharpening up our interactions with researchers and thus ensuring good use of resources. I am very keen to contribute as a member of the public.

    1. Hi Rosemary and thank you for your very supportive comments on our idea!

      I know that as a wider team we are really looking forward to working with you as part of this proposed project.  Your ideas for video resources are great and this is exactly the sort of creative input from our PPI partners that will make this work a success.

      Susan

  24. Guest

    Susan Hrisos 2 years, 10 months ago

    Test

  25. Hi Susan, I was about to submit a bid on behalf of the Royal College of Physicians QI programme, when I spotted yours and realised that there may be an opportunity to collaborate. On the off chance that you are free at the 11th hour, would you be able to have a quick chat with me? I'm on 07557 734934. Aimee

    1. Hi Aimee - are you free to chat around 3pm today? I can call you. Susan

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