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.

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.