Written by Alice Burnand (Research Assistant), Nathan Davies (Associate Professor Primary Care & Population Health), Abi Woodward (Research Fellow) and Kritika Samsi (Senior Research Fellow). 

We recently had the pleasure of hosting a workshop to share the exciting findings from our research project on the role of clinical pharmacists working in primary care to support people with dementia. It was a great opportunity to connect with a diverse audience of health and care professionals, researchers, caregivers, and people with dementia – all with a shared passion for improving the lives of those living with dementia.

Our goal for the workshop was twofold: firstly, to disseminate the key findings from our research, and secondly, to enhance collaboration between various stakeholders in the dementia care landscape. The workshop reflected these goals, included a diverse audience, and an agenda with presentations by our research team. We also invited three speakers, who have been part of our project, to reflect on the study findings and share their contributions. Two of these guest speakers were people with experience of supporting people living with dementia, and one was a clinical pharmacist.

 

 

 

 

 

 

 

 

 

 

 

 

[photos top and bottom: The speakers with lived experience attending and discussing their roles of caring for someone with dementia and receiving support from a clinical pharmacist].

The presentations delved into the specific ways clinical pharmacists can positively impact dementia care. Those with lived experience provided valuable insights into the challenges faced by people with dementia and caregivers, offering a real-world perspective and confirmed the importance of undertaking our research to enhance to quality of care provided to people with dementia.

Reflections from the clinical pharmacist explored topics such as medication optimisation and adherence, services delivered for patients with dementia such as medication reviews, and the pharmacist’s role in identifying and managing polypharmacy. They also shared information about how to access the service, as well as how they can support the multi-disciplinary team, as most our participants were health and care professional who may work alongside pharmacists.

We deliberately incorporated interactive elements within our workshop, through facilitated round table discussions, which allowed participants to share their own experiences and ask questions to our research team and of each other. The open dialogue provided valuable feedback on our research and future exploration. New ideas were received in terms of further disseminating our research and increasing awareness of the clinical pharmacy service for dementia care, including ways to reach underserved groups, such as those from minority ethnic backgrounds.

 

 

 

 

 

 

 

 

[photos top and bottom: The clinical pharmacist sharing information on the clinical pharmacist service, how they provide care to people with dementia and information on how to access these services].

Our workshop promoted collaboration between a variety of individuals, including researchers, clinical, health and care professionals, caregivers, and people with dementia, and we were encouraged by the enthusiastic response from the audience and their engagement in providing detailed feedback. We believe this workshop represented a significant step forward in bridging the gap between research and real-world dementia care. For more information about the study, please click here or contact Alice Burnand (a.burnand@ucl.ac.uk).

This event was supported by funding from the British Society of Gerontology’s (BSG) Small Events fund. The views expressed and discussions may not represent the views of the BSG.

This post is written by Sadie Lawes-Wickwar (Lecturer in Medical Education), Sara Garfield (Lecturer in Pharmacoepidemiology and Drug Safety Practice & Policy), Margaret Ogden (Public contributor), Ishveer Sanghera (Medical Student), Cate Whittlesea  (Divisional Director UCL School of Pharmacy), Sophie Park (Professor of Primary Care and Medical Education), and Afia Ali  (Professor of Neuroscience Pharmacology).

The importance of person-centred communication

Person-centred communication demonstrates good clinical practice and is central to personalised and person-centred care as outlined in the recent NHS England ‘Person Centred Approaches’ framework. This includes verbal and non-verbal behaviours to provide clear information, involve patients in decisions, respect individual preferences, and provide emotional support and empathy. Person-centred communication skills are important for healthcare professionals and need to be gained through skills development and practice (including role play where needed) with appropriate feedback during clinical training. This feedback (whether verbal or written) could be valuable from patients, carers and the public, i.e. the recipients of person-centred care. Medical regulatory bodies, such as General Pharmaceutical Council (GPC) and General Medical Council (GMC), stipulate that patients, carers, and the wider public should be involved in clinical training, and that this should include assessment and feedback.

The role of patients and the public in clinical exams has traditionally been limited and/or passive (e.g. a “case presentation”). As student assessment is a more intensive, curriculum-led type of involvement (over, say, sharing lived experiences which is a common involvement activity in clinical education), this may require a lot of preparation for public contributors, such as training, buddying and mentoring.

Insights from our co-design workshops

There has been little formal research and recommendations for patients and carers to assess students in their person-centred communication skills. This was the rationale for a recent collaboration between the Primary Care Medical Education Expert by Experience (EbE) Group and UCL’s School of Pharmacy EbE Group. Our collaborative group was awarded a ChangeMakers grant in February 2023 to plan and deliver co-design workshops with key stakeholders. Our project aimed to develop a ‘framework’ to guide patient and public feedback for clinical students about their communication skills. We held two ‘World café’ style workshops. ‘World café‘ is a community engagement approach for discussing key ideas with large groups of stakeholders in smaller ‘round’ tables. The aim was to: (1) explore opportunities and challenges for patient and carer involvement in student feedback and assessment, and (2) create an assessment ‘framework’ that can be pilot tested in the future. The workshops were attended by students, public contributors (with lived experiences as patients and carers), and UCL academics from the Primary Care and School of Pharmacy teaching teams.

Four key areas were highlighted as being important to workshop participants in student feedback and assessment in relation to person-centred communication: (1) Information and training for public contributors and students, (2) forms of assessment, (3) suitable methods and pathways by which patients and carers could provide feedback, and (4) support and wellbeing of public contributors and students. We also heard from students that their needs differ in the earlier years (typically pre-clinical) to the later (clinical) years of their course. During the early years they would benefit from receiving patient feedback from public contributors who have had training in giving feedback. During their formal clinical training they need to obtain feedback from patients they meet on clinical placements who may not have had such training.

Participant feedback

Participant feedback from the ChangeMakers project was that the workshops enabled diverse views to be heard and these were thought provoking afternoons. However, on balance there was a lot to discuss in the time we had, and so we plan to continue exploring these issues in future Collaborative EbE Group meetings and in future research. Feedback from our public contributors was very positive. One has shared her experiences of contributing to our ChangeMakers project:

“I was keen to be involved in the Changemakers project because it spans research and education. I haven’t been disappointed. There’s been a lot of contact with students and researchers. Also many reviewing opportunities for PPIE input.  I have been able to build on my knowledge in both fields following an honorary degree of Bachelor of Education which I received from York St John University, so it has been very valuable experience”

Next steps

Our next steps are to explore training opportunities for patients and carers invited to join student assessments and clinical placements, as well as training for students to ask for and process feedback from patients. We are also planning research to formally assess acceptability and feasibility of patient and carer involvement in clinical assessments from the perspective of a variety of stakeholders (e.g. students, Medical and Pharmacy School leaders, allied health professionals, patients and carers). We are looking forward to continuing our work in this area.

 

This post is written by Dr Laura Horsfall (Research Fellow, Research Department of Primary Care and Population Health)

Academic fellowships are a fantastic opportunity for researchers to advance their independent careers, develop new skills, and expand their knowledge base. But they are also very competitive, and the application process can be challenging for many reasons. As someone awarded three post-doctoral fellowships at UCL, I want to share ten personal strategies that eased my fellowship journey and improved my success rate. These are aimed at early and mid-career researchers new to the process or those who have already applied and want to make future submissions easier to manage.

1.Start early
The most crucial advice I can give is to start early. It takes time to develop bold research ideas, identify data sources, carry-out feasibility work, build your training plan, recruit your collaborative team, conduct public involvement, write all the sections, receive feedback and communicate with potential referees. Did I forget the costings? There’s a lot to consider! I started six to eight months before the submission deadline to complete these numerous (sometimes arduous) tasks to a high quality.

2. Develop a submission plan
Applying to multiple fellowship schemes will increase your chances of success, but juggling several submissions is challenging. Creating a spreadsheet with deadlines, documentation (e.g., support letters), and completed sections can help with the workload and feel like you are making progress. Last year, I submitted three mid-career fellowship applications in three months and without the plan, I would have missed at least one of these deadlines. Share the submission plan with your line manager and discuss the possibility of establishing at least one Meeting Free Day (MFD) each week. This was the only way for me to carve out focussed thinking and writing time in an increasingly email/meeting-driven hybrid-working world. On these days, I blocked my calendar, disabled alerts, and added an automated email response to let people know I may not respond until after my MFD.

3. Do your research
This might seem obvious given our line of work but before you begin the application process, it is essential to thoroughly research the fellowship programs and organisations funding them. By looking through strategic reports and signing up for email alerts, I developed a recyclable work programme touching on the emerging research priorities of several funders. I also looked through lists of past awardees on funders’ websites to see what projects are successful and the amount of funding typically awarded. You can also reach out to UCL staff from these lists – I’ve found awardees are always happy to engage and offer insight.

4. Tailor the application
As well as topics, each funder prioritises certain aspects of research practice, such as public involvement, engagement, communication, and impact. Again, it’s important to stay on top of developments. For example, The Wellcome Trust recently published a report on improving research culture, so I ensured that I wove personal and departmental examples of positive culture throughout my proposal.

5. Request feedback
Don’t be afraid to seek feedback from colleagues, mentors, others who have successfully applied for fellowships, and members of the public. I also received indispensable input from the UCL Research Coordination Office for Life and Medical Sciences and the NIHR Research Design Service.

6. Don’t skip skills from other sectors
Many researchers have spent time working in other sectors besides academia, which can enrich the diversity of skills, experiences, and networks in universities. Sadly, the traditional format of academic CVs, which strongly emphasises publications and grants, can effectively overlook other valuable work experiences. The good news is that The Wellcome Trust and UKRI acknowledge these problems and have switched mainly to a “narrative CV”, which allows you to talk about your career journey and boost skills that might be overlooked. I spent the first decade of my career outside the university sector and have highlighted my early exposure to line management, leadership, and positive work practices in my fellowship applications.

7. Highlight person-years of research activity
Make sure any career breaks and part-time work are clearly highlighted. A review panel member once commented that I had produced few outputs in the past three years. In fact, I had created two significant outputs, but they were children, and the panel member had skipped the section detailing my parental leave. Since then, I have mentioned career breaks and part-time work in more than one section, so they are noticed. Our research outputs are often judged in terms of “years since PhD viva”, but I use the correct denominator “person-years of research activity,” which neatly accounts for career breaks, part-time working, and non-research roles. Can you tell I’m an epidemiologist? I use this term in career summary sections; hopefully, it will catch on one day.

8. Be persistent
Rejection is part and parcel of all successful academic careers, but fellowship rejections hit on a more personal level than a manuscript or a project grant. Remembering that there is a high level of competition is essential – even fantastic candidates will be rejected. Plus, initial bad news may not be the end game because many schemes allow you to resubmit. I have eight more fellowship rejections than acceptances under my belt, but the valuable feedback from review panel members, often international knowledge leaders, led to iterative improvements with each submission.

9. It’s ok to find it hard
Applying for one, let alone sequential fellowships is a hard slog. It can be lonely and boring side-lining research activities to spend weeks writing about your achievements, hypothetical projects, and data management plans. There’s often a contract end date looming to add to the anxiety. Be open with your line manager about any challenges to your mental health during the process. I also found the support of a mentor extremely valuable for navigating the submission period and making career contingency plans.

10. Celebrate every submission
As a sector, we focus a lot on those visible research outputs with less recognition of the effort and value of our research “inputs”. So celebrate each submission as a significant achievement and learning experience. One of the few perks of fixed fellowship deadlines is you can plan ahead – dinner out, a trip away or simply a day off to decompress and think about something other than directly incurred costs.

Written by Dr Abi Woodward (Research Fellow), Dr Megan Armstrong (Senior Research Fellow), Swettha Mahesarajah and Rasha Meah. Swettha joined PCPH as a temporary Research Assistant to support a UCL Research Culture Awards project. Rasha was a student researcher on placement through the In2Research programme.

Voluntary and community sector organisations (VCSOs) are often a lifeline for local communities. Working alongside organisations that are trusted by underserved groups is vital for addressing inequalities, as well as for improving representation in research. In June 2022, eight representatives from six London-based VCSOs participated in a knowledge exchange workshop. Funded by the UCL Research Culture Awards, Principal Investigators Abi Woodward and Megan Armstrong aimed to encourage greater collaboration between academia and VCSOs, to achieve more joint delivery of research with underserved groups. This project is linked to a larger study exploring the self-management of multiple long-term conditions in people experiencing socioeconomic deprivation.

The VCSOs in attendance were from the British Pakistani Foundation (n=2), Colindale Communities Trust (n=1), Fair Money Advice (n=1), Skills Enterprise (n=2), St Joseph’s Hospice (n=1), and Youth Realities (n=1). All VCSOs identified as having a shared interest in addressing issues of inequalities and socioeconomic deprivation. We explored how research collaboration with VCSOs can be improved, as well as how academic researchers can design and disseminate research in line with community priorities. Through group discussion, online polls, and interactive exercises, we identified some of the key barriers, facilitators, and benefits to VCSO engagement in academic research.

What should be prioritised when conducting research with underserved groups?

We asked attendees during an interactive whiteboard exercise to tell us what they think, and these were the responses:How can VCSOs be better involved in research?

VCSO representatives said they were approached to help with the identification and recruitment of participants and to advise on the types of questions to ask. Attendees stressed the importance of academics providing detailed information about individual research studies as they want to understand how research aligns with community priorities. One attendee highlighted how clear communication led to a positive experience during a recent research project in partnership with UCL and the NHS:

…it was a positive experience for us because the information was told to us beforehand and… clear information was given to volunteers and staff who were participating in the research…so the learning from that is clear information from the beginning. (Project Manager, Skills Enterprise)

Attendees explained the importance of truly understanding the study objectives and their potential to influence policy change. Some agreed however, that a lack of investment in time to communicate key messages during initial engagement had left VCSOs uncertain of their role in research. Some questioned whether researchers recognised the true value that VCSOs add. One attendee explained more about the role they can play alongside academics:

 …if you don’t have that level of lived experience and the questions are sensitive, it can come across as paternalistic or can be viewed as judgmental so having someone who’s been in somebody’s shoes asking those very sensitive questions makes a huge difference…it is very difficult to ask those questions without having that level of empathy. (Managing Director, Fair Money Finance)

Another attendee said, ‘the wording used by university researchers is not what people understand’ (CEO, Colindale Community Trust) and asked for academics to work with VCSOs to get this right.

Another key theme that came out of the workshop was the shared concern of not being kept informed about the outcome of the different research projects VCSOs get involved in (within academia and beyond):

After initial requests to help with research we find that there is no engagement post the information collection period, there is a disconnect. (Chief Operating Officer, British Pakistani Foundation)

 The frustration is that the borough does amazing research, data and statistics and they know what the services are, but two years on we don’t know how to use that to influence anything. (CEO, Colindale Community Trust)

Attendees also spoke about the value of utilising participatory methods in research studies. Such methods can help researchers achieve more meaningful interaction with stakeholders and underserved communities. The key message here was to ‘adapt your research in a way that will get you the results that you need’ (Senior Youth Worker at Youth Realities). In addition, VCSOs highlighted that there may be limitations to staff and resources and asked that researchers consider whether additional funding can be offered to enable them to collaborate in research studies.

Conclusion

VCSO representatives typically wanted the opportunity to be more actively involved in research studies, and earlier on. Meaningful community collaboration requires a balanced partnership between academics and VCSOs.  Focusing on this could help provide mutual benefits and a greater connection in research to the needs of underserved groups.

As such, there is huge potential for academia to engage more with VCSOs to add value to research studies. Establishing a partnership between academia and VCSOs provides the opportunity to discuss shared priorities, understand capacity and the resources needed, and identify roles that work for both parties.

 

The project team would like to thank everyone who participated in this project for their valuable insights and contribution.

 

 

 

 

 

 

 

 

Written by Abi Woodward (Research Fellow), Megan Armstrong (Senior Research Fellow) and Rasha Meah (Student Researcher, In2Research Programme).

Despite having worse health outcomes, individuals experiencing socioeconomic deprivation are less frequently included in research. Through a Beacon Bursary funded project, we explored the barriers to research participation among underserved groups. This project is linked to a larger study exploring the self-management of multiple long-term conditions in people experiencing socioeconomic deprivation. We held two public engagement workshops (online and face-to-face) in June 2022 with a total of 11 London-based participants that had at least one long-term health condition and were struggling financially. Two Patient and Public Involvement (PPI) members also attended to share their perspective on taking part in research studies.

What happened at the workshops?
Through a combination of group discussions and interactive exercises, we asked participants to tell us about their experiences (if any) of being involved in research, their reasons for taking part or not, any negatives associated with taking part and how they find out about research opportunities.

We began the workshop by seeking to understand participants’ perceptions of research. For the online session, this was achieved through a myth busting exercise. During the face-to-face session, we did a postcard exercise to visually explore participants’ understanding of research. Postcard exercises are designed to help people relay their feelings through pictures or photographs. We scattered lots of postcards on a table top and asked participants to choose the picture that most related to what they were being asked and they added notes afterwards:

What did participants tell us?
Some of the main themes that emerged were around accessibility of research opportunities, the importance of feeling valued and financial payments/reimbursements.

Access to research opportunities
Most of the participants had some previous experience of research (i.e., interviews, clinical trials) but they had general difficulties finding research opportunities. Participants made suggestions about how to raise awareness of opportunities such as distributing leaflets in community provision including GP surgeries, advertising in newsletters, social media and free newspapers, and word-of-mouth. The issue therefore was not a lack of research but a lack of awareness of opportunities:

“There’s very little information out there. You have to actively search it out to get involved.” (Face-to-face participant)

Participants spoke about flexible data collection methods such as offering options for interviews to accommodate needs i.e., physical/mental health, mobility and disabilities. A shift towards remote research since the Covid-19 pandemic has created more accessible options for some people who work or have childcare responsibilities, but the issue was also raised that researchers need to be mindful of digital exclusion among underserved groups.

Feeling valued
Overall, participants wanted to feel valued when taking part in research; something that was considered essential for repeat engagement. Unfortunately, some had encountered bad experiences in the past:

“I got the impression that researchers do not really appear genuinely interested in the input of the public…it seems they’re just meeting the criteria and ticking boxes.” (Face-to-face participant)

Issues around trust, respect, compassion, and cultural competency were also raised. One participant spoke at length about this:

“I’ve come here to add my lived experience…not…to be told that my experience isn’t good enough…or it isn’t what the researchers actually want…there’s a reason why I’ve made it to this [session] today…There were things done for [the researcher] to understand my position and background and because of that, I’m here.” (Online participant)

A positive experience could therefore give people a sense of empowerment:

“Being an expert by experience and sharing what I’ve been through in order to help others is my way of making lemon cake out of lemons…PPI is my way of giving back a little but being part of something great.” (PPI representative, online workshop)

Participant payments
For those on a low-income, the financial implications of taking part in research was raised at both sessions. Appropriate payments/reimbursements were considered essential since many were unable to undertake paid employment due to health conditions.  Participants expressed the need for researchers to pay participants in a timely manner and to provide several options for payment because of the implications upon benefit claims/entitlement. Travel expenses were also a source of concern. To increase the accessibility of research opportunities, it was suggested that advance payments for travel costs could help.

One participant who did not have access to Wi-Fi spoke about the cost implications of doing online research using mobile data:

“If I’m using my last five or 10 pounds to actually access [remote research]…if I’m getting the money from them in four to six weeks’ time what do I live on, what do I eat…The monetary aspect is a massive barrier in itself.” (Online participant)

With these comments in mind, research departments may wish to consider whether participants should be routinely reimbursed for online research costs (see useful resource on payment guidance for researchers).

Next steps
The project has produced a short film which features workshop participants and a PPI representative. The purpose of the film is to raise awareness of the barriers to participation in research with underserved groups.

We have asked participants for their ideas on how to share the project outputs across local communities/networks, to encourage engagement in research. We plan to feed these ideas into our dissemination strategy.

The project team would like to thank everyone who participated in this project for their valuable insights and contribution.

This blog is written by Rasha Meah (Student Researcher, In2Research Placement) and Dr Abi Woodward (Research Fellow, Research Department of Primary Care and Population Health). 

For the first time, the Research Department of Primary Care and Population Health (PCPH) has hosted an In2Research placement. In2Research aims to improve access to postgraduate research degrees and careers for people from ethnic minority and/or low socioeconomic backgrounds. By providing a placement, hosts play a vital role in supporting and empowering people to pursue a career in research.

In June 2022, Rasha Meah joined PCPH for an 8-week research placement. She was supervised by Dr Abi Woodward and contributed to a project that explores the self-management of multiple long-term conditions in people experiencing socioeconomic deprivation.

Rasha Meah, Student Researcher:

I am a second-year undergraduate studying Psychology at Queen Mary University of London. Most of my study was during the pandemic, when gaining additional experience became particularly difficult. I was searching through my university’s career website when I found an internship opportunity by In2Research, which involved a funded research placement.

As someone with little experience of qualitative research outside of university, this placement was a chance to explore a passion for research and pursue a future career in academia. I applied but did not expect to be selected. I was also sure that I would not be able to get my first choice; even after working rigorously on my academic CV and preparing for my interview. I feel fortunate and grateful to have succeeded in both.

To structure my placement, I had weekly supervision meetings with Abi, where we would discuss upcoming tasks and the progress I had made. This gave me a sense of routine as my weeks would vary. It also provided me with a comfortable space to bring up any concerns I had which eased my anxieties.

When I started my placement, I was briefed about supporting some public engagement and knowledge exchange workshops. Two of the workshops (remote and face-to-face) took place in my first week. They focused on how to increase research participation among people from low socioeconomic status (SES) groups. Even after attending the first workshop on zoom, I still didn’t feel prepared for the face-to-face workshop and what it would be like interacting with so many people, in the same room (and at such short notice)! Nonetheless, I helped meet and greet participants, answered their questions, and developed my organisation skills through keeping a record of key points during lively discussion. I found it humbling to listen to how people managed their conditions and how academics needed to consider the disadvantages people face.

The third workshop took place remotely and looked at how academics can work more collaboratively with voluntary and community sector organisations during research. This experience taught me how to clearly communicate information to a range of stakeholder groups and work collaboratively with others.

Following a very busy first couple of weeks, the focus for my placement turned to some more ‘core’ tasks where I checked interview transcripts for accuracy against audio recordings. Listening to the audio recordings helped me become familiar with the key themes emerging from the study. I also shadowed Abi in face-to-face and remote research interviews which challenged my active listening skills so having some background beforehand really helped. During the interviews I observed how, as a researcher, Abi navigated the topic guide and probed participants to elicit more information. The face-to-face interview took place in London and had the challenge of commuting and being in an unfamiliar environment but yielded more in-depth answers, whereas the remote interviews were direct and more accessible (besides occasional tech difficulties). I found the latter more enjoyable as I could focus on the interviewing technique and answers without having to worry about my own behaviour and whether my presence was impacting the interview.

I also took ownership of a systematic review project where I reviewed 26 studies, looking into the barriers and facilitators of diabetes self-management among low SES groups. I was supported throughout and began at the data extraction stage. I then did a quality assessment and moved onto the thematic synthesis using NVivo. This task was especially daunting as I had only encountered the process of coding briefly in my studies. After asking many questions and continuous reorganisation of the coding framework, I moved onto writing up the results section of the paper which helped develop my critical analysis skills.

The most important lesson this experience has taught me is to recognise that success can be attained with passion and perseverance. This project has been an especially rewarding experience, and thanks to the support of my wonderful supervisor, I have developed research skills that I can use throughout my future academic and professional career. 

Abi Woodward, Placement host/supervisor

I found supervising and mentoring Rasha to be an extremely fulfilling experience and would encourage others to be an In2Research placement host. I invested a lot of time in planning a work schedule for Rasha, making sure that she got the most out of the experience and had a variety of research related tasks. An important part for me was arranging some participant interviews for Rasha to observe so that she could get hands-on experience. It was great to be able to share some of the knowledge and expertise that I have acquired over the years, especially with someone so keen and willing to learn. I look forward to hearing about what Rasha goes on to do next!

 

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 Dr Patricia Schartau (GP at Hampstead Group Practice; Academic Clinical Lecturer in Primary Care at the UCL Department of Primary Care and Population Health) and Dr Ruth Plackett (NIHR Three schools’ Mental Health Programme Fellow at the UCL Department of Primary Care and Population Health)

On 16th May 2022 we conducted a workshop about social media use and young adult mental health funded by the NIHR Three Schools Programme. We focused on young adults aged 16-25 years.

The online workshop was hosted by the Research Department of Primary Care and Population Health (PCPH) at UCL. A total of 27 people attended, including representatives from charities (e.g., McPin, Mental Health Foundation), young adults with lived experiences, parents and educators, healthcare professionals, students, and researchers with backgrounds in public health, social care and primary care research.

What were the aims of the workshop?

We aimed to:
a) learn about research on social media use and young people’s mental health;
b) share ideas and discuss future research questions;
c) build our networks.

Why was this topic chosen?

Mental health in young adults is as a real concern. Young people’s mental health problems are increasing over time and GPs are looking after and/or referring more young people to mental health services, mostly with long waiting times.
Many newspaper articles have reported on how social media use is related to mental health problems. The articles call for the need to address the emerging ‘social media’ epidemic, as social media use is becoming ubiquitous among young people and has increased during the Covid-19 pandemic. As a GP (Patricia), I have seen a recent increase of young adults with mental health problems, with many reporting social media as a cause or a contributing factor.

What is the evidence base?

There are benefits to using social media, as it can improve social support, strengthen bonds, and reduce loneliness. On the other hand, social media use is related to feelings of depression and anxiety in young adults, but there is limited evidence to suggest social media itself causes these issues.
We had the privilege to welcome Dr Lizzy Winstone and Dr Lucy Biddle from the University of Bristol to present at the workshop. Lizzy discussed her research that found that the effects of social media on mental health differ depending on how we use it and how long we use it for. Lucy discussed ideas and challenges around developing guidelines to assist mental health practitioners to talk to young people about online activities. Some guidelines on social media use exist but they are general, hard to apply, and not tailored towards different healthcare professions, such as GPs.

What did we do in the workshop?

In groups we discussed two key areas of research:
1. How can we improve social media campaigns to help young adults access mental health services/information? (Padlet questions 1 and 2)
2. How can we improve primary care experiences for young adults who seek help for mental health issues that might be related to social media use? (Padlet questions 3 and 4)

Padlet questions:

Key messages from discussion of the first set of questions:

Reach

• Social media could reach people who are unsure about seeking help.
• Not all young adults have access to social media: we need to be careful not to widen health inequalities.

Support

• Signposting towards resources and advice on where to seek help.
• Empowering young adults by providing information.

Content of campaigns

• Delivered by key influencers or young adults with lived experience.
• Balance between normalising and glamourising mental health problems.

Key messages from discussion of the second set of questions:

What should primary care clinicians ask young adults and how?

• Be open minded and non-judgmental: Ask about whether a young adult is using social media, what makes them feel good or bad about using it.
• Questions about social media use need to be incorporated dynamically into the consultation rather than delivering a ‘screening’ question.

Who should ask it?

• Anyone in the community healthcare team who has contact with young adults with mental health problems
• Time constraints: Follow-up consultations may be required with the GP and/or other professionals, such as social prescribers.
• Schools and community groups could provide more support.

Further support for young adults

• What are the best resources that GPs can signpost to?
• Provide advice about managing privacy settings.

Training for clinicians

• Practical and tailored guidance is needed on how to discuss social media use with young adults.
• Training in social media literacy is needed.

What’s next?

As a result of the workshop, we have connected with researchers, charities, young adults with lived experience and clinicians across the country. We are applying for further funding to explore what guidance and training we can develop and provide to primary care clinicians for them to support young adults with mental health concerns.

The workshop was a rewarding experience and it helped us to understand these issues from different perspectives. Our attendees provided positive feedback, and many requested to stay involved with the research.

“Eye opening workshop! very tricky issues, great to talk about them thank you”

Ruth will lead on this research going forward as part of her NIHR Three Schools’ Mental Health Fellowship and Ruth and Patricia plan to apply for further funds.

For further information please contact Ruth ruth.plackett.15@ucl.ac.uk or Patricia patricia.schartau@ucl.ac.uk. Or follow us on Twitter: @ruthplackett or @DrPatriciaES.

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.

 

This blog is written by Shoba Poduval (Clinical lecturer) & Chandrika Kaviraj (Expert by Experience).

Shoba Poduval (project lead):

We have known for some time that people from ethnic minority backgrounds suffer from poorer health outcomes, but are less likely to be included in health and social care research studies (1). The Covid-19 pandemic has exacerbated inequalities and multiple studies have shown that people from ethnic minority backgrounds have an increased risk of infection, Intensive Therapy Unit (ITU) admission, and death (2-4).

These data plus the fact that two thirds of my NHS colleagues who lost their lives to Covid-19 were from ethnic minority backgrounds (5) has had a profound impact on me, which has resonated every time I have completed a Covid-19 workplace risk assessment that has scored me at higher risk than my white counterparts due to my ethnicity. We often talk about research impact, but rarely does it cause us to reflect not only on our own personal identities, but also our professional commitment to diversity and inclusion. My idea for this project was borne out of a need to explore this and my sense of connection to the communities affected by these issues. “You have to use your privilege and your strength to make a difference, otherwise it’s worth nothing.” (Asma Khan, leading female chef, entrepreneur and activist).

I knew that in order to be accessible and generate rich discussions, the project required imagination and innovation, beyond the methods traditionally used in academia. I therefore worked with Kois Miah, a photographer based in east London specialising primarily on projects that combine photography with community participation for social change. We successfully gained UCL Community Engagement seed funding (https://www.ucl.ac.uk/ucl-east/news/2021/jul/community-engagement-seed-fund-2021-grants-announced) to collaborate with members of east London’s diverse communities in online workshops sharing our experiences of illness, healthcare, and Covid-19. We used visual storytelling through images created with smartphone cameras.

 

The photos generated by participants formed a catalyst for discussion in co-design workshops to address barriers to engagement with research. Professional portraits taken by Kois supplemented the participant-generated works.

 

Chandrika Kaviraj (project participant):

This project was unique in that it combined listening and photography to discover insights. It was by far the best health research and health engagement project I have taken part in. And yes, I’ve been on a few.

The individuals gained photography skills and tapped into potential we didn’t know we possessed. We expressed ourselves creatively and through discussions as a group, when we hadn’t been listened to before. People often turn their noses up at a therapeutic approach but this did so in a subtle yet powerful way. We felt confident sharing our life experiences and our passions in 2021.  It was slap bang in the middle of the Covid-19 pandemic. We were made to feel comfortable because Shoba and Kois shared of themselves first.

As a carer, although I am vocal and advocate loudly for my elderly parents, I hide behind that aspect of my life.  There are some carers who feel invisible but we also feel vulnerable.  Added to that, being a woman of colour – many assumptions are made. Dealing with this, as well as assumptions made about the people I care for, with immigrant backgrounds has been challenging and “Diverse Voices” gave me the space to express it verbally and creatively.

Chandrika and Shoba (along with the rest of the “Diverse Voices” team) have the following recommendations for those of you who wish to engage participants from different backgrounds:

1. Seek out unique and creative ways to encourage collaboration- drawing and photography are examples of accessible ways of doing this which don’t require language skills or general/IT literacy;
2. How will participants benefit from being involved? The funding criteria for this project was two-way exchange of knowledge and skills. This can be applied to research approaches also. Acknowledge your participants’ investment in your project’s aims and objectives. This doesn’t just mean financial compensation through vouchers, but also offers of training and opportunities to engage at every stage and with other projects of interest.
3. Respect participants’ lived experience and the value and insight this brings to your work;
4. Consider the impact of your work not just in terms of scientific publications and presentations but also engaging with communities to discuss how change can be brought about “on the ground”.

Final words from Chandrika:

“This outstanding project allowed each participant to explore our experiences and feelings, not just about Covid-19 but the health systems we encounter on a daily basis. With “Diverse Voices”, I feel I have been encouraged and allowed to express, been inspired to be creative and have hopefully, found a way to make changes in health and social care research. I have made six potential collaborations in future projects, but also wonderful friends, I hope, for life.”

This project is dedicated to those fighting the systemic inequalities that lead to the alienation of many people, not just due to their race, but also gender, disability, and wealth.

““Be the change you want to see in the world” is one my favourite quotes and something I’m trying to live by. If we can look at music and culture in the same way, people won’t be told “you can’t do that”, they will chase bigger dreams and be free to express themselves how they want. The arts can be the most powerful vehicle for change and should be respected as such.” (Jamal Edwards, pioneer music entrepreneur and philanthropist).

 

With many thanks to:

Kois Miah & the “Diverse Voices” team

Briony Fleming, Sam Wilkinson, Jordan Abankwah and the UCL Public Engagement/UCL East teams

Jeshma Mehta, Bijal Parmar & the UCL research administrators

Niccola Hutchinson & the Co-Production Collective

The Bloomsbury Theatre

Karen Hubbard, Rebecca Chester & The Brady Art Gallery

Raheel Nabi, Phil Mason & UCL Media

Further information:

The images (as well as a recording of the private view with panel discussions) will be shared online (details TBC) and represent a legacy by and for east London’s ethnic minority communities.

REFERENCES

1. Treweek S, Forouhi NG, Narayan KMV, Khunti K. COVID-19 and ethnicity: who will research results apply to? The Lancet. 2020;395(10242):1955-7.https://doi.org/10.1016/S0140-6736(20)31380-5
2. Sze S, Pan D, Nevill CR, Gray LJ, Martin CA, Nazareth J, et al. Ethnicity and clinical outcomes in COVID-19: A systematic review and meta-analysis. EClinicalMedicine. 2020;29-30:100630.https://doi.org/10.1016/j.eclinm.2020.100630
3. Williamson EJ, Walker AJ, Bhaskaran K, Bacon S, Bates C, Morton CE, et al. Factors associated with COVID-19-related death using OpenSAFELY. Nature. 2020;584(7821):430-6.10.1038/s41586-020-2521-4
4. Public Health England. Beyond the data: Understanding the impact of COVID-19 on BAME groups. 2020.
5. Rimmer A. Covid-19: Two thirds of healthcare workers who have died were from ethnic minorities. BMJ. 2020;369:m1621.10.1136/bmj.m1621