The team behind the Digital Health Inclusion Project and please to share the link to their recent blog about a dissemination workshop with a community group in Leeds. The blog shares findings from a NIHR School for Primary Care study, “Digital Health Inclusion Project” led by Dr Shoba Poduval.

The team organised a participatory art workshop to share research findings with attendees of the Burmantoft’s Community Friends (BCF) digital hub (the Breakfast & Browsing group) in Leeds.

Community members shared their reflections and perspectives on the findings and produced a number of images which can be accessed via their workshop blog.

This post is written by Sophie Park (Professor of Primary Care and Medical Education)  and Dr Emily Owen (Research Assistant, Community Pharmacy and General Practice) 

The Society of Academic Primary Care (SAPC) in its 50th year, have collaborated with the Association for the Study of Medical Education (ASME) to host a joint conference event. Our SAPC Education Research Special Interest Group (SIG) met on Tuesday 5th July 2022 to discuss spaces for practitioner-informed research and enquiry.

It is sometimes hard to know where to start. You are a practitioner and have an area of keen interest, but feel the topic is so vast, any firm plans about research feel beyond reach. At the SIG, a group of scientists and practitioner ‘insider researchers’ met to discuss ways of beginning to bring a research idea into focus.

Stakeholder & Patient and Public involvement (PPI)

As practitioners, we often hold a view or perspective which relates to our own embodied experience and meaning-making processes about particular events. Reaching out at the outset of the project is crucial. Attentive listening to how others experience an issue is important, to help understand what others feel the key and important problems are. Continuing these conversations then enables a dynamic movement between inductive (emergent) response to generated data and deductive (pre-determined) focus on the data, embracing a range of views and concerns.

Once you start to have conversations, consider how PPI/stakeholder perspectives might shape how you approach the literature and data about this topic. How might this focus your project and analysis? We shared an on-going review (PROSPERO: CRD42022314280) exploring collaborative and integrated working between General Practice and Community Pharmacies. Having conversations with PPI/stakeholders is informing possible ways of thinking about patient care (access, help-seeking behaviour, psychological safety, continuity); working with and across multi-disciplinary colleagues; and professional development and education. These conversations support an explicit and reflexive movement between experiential priorities and the existing evidence data, helping to prioritise ways of drawing together analytical categories.

Rather than feeling anxious about the impact of your own and others’ experience on the production of data, celebrate your growing insights and understandings about these experiences, and be reflexive about how they are shaping your views during the production of the research protocol, project, and analysis. You will not be able to incorporate all PPI/stakeholder views and agendas, so establish clear expectations about the purpose of your conversations. Enjoy the contrast of views and note how these differences emerge. Might this provide you a new avenue to explore your topic?

Theory

We tend to think that whatever view we hold is ‘normal’. It is helpful, therefore, to share and discuss your ideas with others. These discussions will make visible areas of ‘cognitive dissonance’ or tensions and help to build insight about the particular theories or evidence-base you are using. Start to consider contrasting perspectives. How do these differ from yours? Is your view still helpful to hold, or might you begin to transition to a different position in your approach? This curiosity and movement between different ‘ways of knowing’ are the basis of ‘critical thinking’. These help to cultivate an appetite to understand other positions, supporting you to build a rationale for why you are approaching your research in a particular way, and how you plan to produce particular forms of knowledge outputs or artefacts.

Methods

Some approaches to research will feel more comfortable than others. Be brave and consider multiple options before you plan your project. Consider what it is you want to know, then how a different approach might enable you to know about this topic in a different way. How might each contribute to your overall aims about contribution to practice and policymaking, and moving your disciplinary knowledge field forwards? For example, do you want to create an evaluation project? These often aim to measure the effectiveness of an ‘intervention’, then perhaps make comparative claims. Instead, you might want to conceptualise it as a process, making visible the nature of that process through more exploratory or in-depth qualitative methodologies.

There is no ‘right answer’, and each project/approach will contribute in different and particular ways. What is important, is that you consider these aspects in advance, so that you can plan and anticipate the challenges and opportunities of each theoretical and practical approach from the outset.

Be Realistic

At the beginning, it can feel completely over-whelming. The planning process can feel endless: you want to move onto the practical ‘doing’ of the project as soon as possible. Be patient. Use your enthusiasm to move through the processes above: engagement and dialogue with stakeholders/PPI; reading, and re-reading literature to identify your gap; and mapping the available methods and potential knowledge outputs. Second, keep the project feasible. A focused project will enable you to progress to the next project. Ask yourself what is most important to you at this moment in time and start from there.

Peer Support

Lastly, utilise peer support during your research planning. Enjoy the creative production of your project and share your challenges. Colleagues may have experienced something similar or be able to highlight where you are identifying something innovative in your area of expertise. Through presenting your ideas to an audience, you can shift your thinking about a project: having been immersed in a particular topic, it is sometimes helpful to realise which areas are new or interesting to others. These conversations can also help you to focus your dissemination and spaces for impacting future research, practice, and policy.

Thank you to all who attended the SIG, we look forward to meeting again soon.

This post is written by Greta Rait (Clinical Professor of Primary Care and Health Services Research) and Jane Wilcock (Senior Research Fellow) who have played a lead role in an international collaboration aimed at supporting people after a diagnosis of dementia.

By 2050, the World Health Organisation has estimated that 139 million people world-wide will have dementia. There is currently no treatment for the disease and no cure. We know that people living with dementia and those who care for them often have negative experiences of the dementia diagnostic process.

People tell us that they receive insufficient information after a dementia diagnosis, there is a pervasive view that little can be done and that you are given are a diagnosis and told to go to home and get on with it. This has been exacerbated by pandemic restrictions on services and community-based supports.

Most dementia post-diagnostic support does not consider quality of life and is reactive and not proactive, it is also very patchy in terms of provision at an international and national level. Health care professionals can find communication of a dementia diagnosis difficult. They can find it tricky to get supports and care packages in place. They report variations in service availability and a lack of integration of services.

What was our approach?

We are part of an international consortium led by the University of New South Wales with colleagues in Canada, The Netherlands and Poland partnering with people living with dementia, those who care for them and healthcare professionals to improve dementia support.

The UK team (Greta Rait, Jane Wilcock at UCL and Louise Robinson and Marie Poole at Newcastle University) undertook a review and thematic analysis of global National dementia strategies and guidelines and public health campaigns.  It became clear from this review and workshop discussions with our partners that there were multiple areas requiring attention but for this ambitious study we wanted to focus on doing one thing and one thing well. From this it became clear that we would focus on the need for support during the first 12 months post diagnosis.

Our work highlighted:

• the uncertainty following a diagnosis about what the future holds and who can help
• how accessing good support at the right time is key to living positively with dementia
• concerns among healthcare professionals that they don’t always know enough about dementia, or the organisations and services that can offer practical or emotional support
• ongoing issues during the Covid-19 pandemic with finding and providing good dementia support

Through an iterative and collaborative process of co-design workshops and user testing refinement we have developed Forward with Dementia  a website and personalised toolkit to help people with dementia, their families, and professionals providing support, to access the right information and support at the right time. For free and on any device. Each partner country has translated and culturally adapted the intervention to their own regions. The site is available in Polish, Dutch and French Canadian.

How Forward with Dementia can help?

The online guide brings together practical advice, personal experiences from people with dementia and those who care for them, and topical news stories.  You can find information on key issues: Hearing (and giving) a diagnosis; Coming to terms with dementia; Managing symptoms and changes; Supporting health and wellbeing; and Making plans and decisions.  The site is designed to simplify navigation, ensure accessibility, and written in a friendly non-scientific language either for a person with dementia, family carer or healthcare professional.

A personalised toolkit lets people choose and save information that is relevant to them and create actions to take positive steps to living life with dementia,  without having to remember a password and log-in name.  The toolkit can be shared with others such as family, friends, professionals though sharing a unique URL.

Bill has been part of the UK co-design group.  He cares for his wife Jo and is a passionate advocate of improving understanding of dementia and living positively. As well as being involved in the development of the guide, Bill continues to use it for support as their circumstances change:

“My wife Jo was given her diagnosis during lockdown and I, like many others had no experience of what to do next. Who do I turn to? What help is available? Where can I find out everything I need to know? The realisation that I didn’t know what I didn’t know was overwhelming. now. If only Forward with Dementia had been around then my life would have been so much easier. As the research and website developed so, sadly, did Jo’s journey. I was able to contribute from real time life experience and also gain insights from others into both my journey and Jo’s, all at the right time for me. I have and will continue to use this resource as a valuable part of my dementia toolkit.”

 Join us to find out more

We are trying to reach out to as many people as possible who would benefit from accessing Forward with Dementia.

• You can explore the site and create a toolkit
• Share the guide with family and friends
• Consider using this with patients or clients to start difficult conversations
• Help us with our evaluation and to improve the site by completing the short website survey via the homepage or reach out and speak to us. We would love to hear your feedback.
• You can request our leaflets and posters to help raise awareness

Follow us on social media for regular updates and information about promotional events.

Facebook: @ForwardDementiaGB

Twitter: @ForwardDementia

Instagram: forwardwithdementia_gb

YouTube: Forward with dementia International

What next? We have been awarded a research grant from the NIHR Three Schools’ Dementia Research Programme to produce and deliver a tailored supportive guide to social care after a diagnosis of dementia.

Jane will lead on this research across the NIHR Schools of Primary Care, Public Health and Social Care Research partnering with colleagues at Newcastle University and King’s College NIHR Policy Research Unit in Health and Social Care Workforce.

For further information about Forward with Dementia, or to request resources such as leaflets or posters contact Jane Wilcock at j.wilcock@ucl.ac.uk

Forward with Dementia in the UK are funded by the Alzheimer’s Society.