Patient and public perspectives of involvement in CV research in Scotland: Heart Engagement And Research Talks

Cardiovascular disease (CVD) is a leading cause of global mortality, necessitating extensive research efforts. In Scotland, the NHS Research Scotland (NRS) Cardiovascular Network plays a pivotal role in coordinating cardiovascular research. Patient and public involvement (PPI) is crucial for shaping meaningful research strategies, yet barriers to such engagement persist.

We organised a hybrid PPI event, bringing together patients, researchers, and stakeholders. Interactive sessions explored barriers and enablers of PPI. Qualitative and quantitative data were collected, focusing on communication, commitment, and value as key themes.

Participants highlighted communication challenges, emphasising the need for clear, accessible information about research involvement. Commitment barriers included costs, travel, and time constraints. Feeling valued as research participants was essential, emphasising recognition of diverse experiences. Running the event as a hybrid facilitated broader participation, employing professional notetakers, British sign language (BSL) interpreters, and moderators.

In conclusion, holding this event emphasised the importance of PPI in cardiovascular research, outlining communication, commitment, and value as key facets. Hybrid events enhance inclusivity but demand careful planning. Meaningful PPI, as exemplified in this study, informs and enhances research quality, underscoring the need for continued investment in patient involvement initiatives.

Introduction

Cardiovascular disease (CVD) is the leading cause of death and disability globally, accounting for 32% of all global deaths in 2019, of which 85% were due to myocardial infarction (MI) and stroke.¹ CVD and associated circulatory conditions are the most common cause of premature death in the UK, and are estimated to cost the National Health Service (NHS) £9 billion each year.² In Scotland, it is estimated that 700,000 people are living with CVD, resulting in NHS costs of approximately £800 million per year.² Research in CVD has been critical to improving cardiovascular outcomes over the past three decades.³ Identifying what research is being conducted in Scotland ensures continuity, prevents duplication, and ensures effective use of resources. For this purpose, national research networks have been established.

NHS Research Scotland (NRS) Networks were established through the Chief Scientist Office (CSO) to support delivery of a range of high-quality studies across a spectrum of disease and clinical need.⁴ All research within Scotland lies within the remit of at least one network or specialty group. The Cardiovascular (CV) Research Network is the second largest of the 25 specialty network groups in Scotland, with research activity taking place in all 14 health boards. The remit of the CV Research Network is to support and develop a national approach for CV research.⁵ Additionally, the remit includes collaborating across the UK and working jointly with the National Institute for Health Research (NIHR) in England and Wales, and Health and Social Care in Northern Ireland.⁴ The CV Research Network work closely with universities, charities, and industry partners. However, historically, NHS CV Research Network has not had the direction to advance patient and public involvement within its network. In October 2021, the strategic plan for the CV Research Network placed patient and public involvement at its core.⁶ This is reflected in the commitment that the CSO has made to the UK standards public involvement.⁷

Patient and public involvement (PPI) in health is a rapidly growing and fundamental aspect of how we conduct health research.⁸ PPI refers to the active engagement of patients,⁷ carers, and members of the public in the planning, management, governance, evaluation and dissemination of research.⁹ Formal structures that involve patients, carers and the public, alongside researchers, can meaningfully inform and improve the value and relevance of research.¹⁰ This approach enables collaborative working between patients, researchers, and the public to create opportunities to share knowledge and bring together experiences of a diverse group of individuals, supporting inclusion and equity.¹⁰ However, it is important to acknowledge existing known barriers to participation in research, such as the logistical and language challenges to achieving these goals.¹¹

In the absence of an established CV Research PPI Network, and to address the strategic aims of the NRS CV Research Network, in particular, supporting equality, diversity and inclusion, we organised a hybrid PPI event.⁷ The aim was to hear first-hand what CV patients in Scotland want from research and how they want to be involved. This event was the first step towards integrating PPI within the CV Research Network, and this paper reports the findings from that day.

Method

We staged a one-day national hybrid PPI event in Glasgow, Scotland, in May 2022. The morning consisted of an interactive programme of specialist talks by CV experts, including patient representatives, public engagement leads, researchers, politicians, senior managers from the CSO and charity partners. We arranged for in-person and online attendance. The afternoon was split into two interactive workshops, one to explore barriers to patient and public research involvement and one to explore enablers. A total of five groups (three in-person and two online) were facilitated by researchers. Each group contained between four and six participants.

Participants

Due to COVID-19 restrictions, in-person attendance was limited to 48 patients and professionals. To facilitate workshops and allow adequate engagement with participants, online participation was limited to 50. We advertised the event through the NRS Networks, on social media, in the press, and locally within hospitals across Scotland, the health boards, and our charity partners (British Heart Foundation, Heart Alliance, Chest, Heart and Stroke Scotland, Pumping Marvellous, Somerville Foundation and the Scottish Health Research Register and Biobank – SHARE). Additionally, we engaged with leaders from a local health and social care group sensory hub to build trust and awareness about our event. To support patient participants, we offered travel expenses and accommodation for those who required assistance to attend. Participants were able to register via research nurses in Scotland, Eventbrite or email to the NRS CV Research Network manager.

Data collection

Quantitative data

During registration, participants provided basic demographic information including sex. On the day, attendees used Mentimeter (Stockholm, Sweden) to provide information about NHS Health board location. To maintain anonymity, participants were not asked to provide other demographic or disease information.

Qualitative data

All specialist talks in the main programme were audio recorded using Webex (CISCO Systems, San Jose, USA) and a professional notetaker provided online closed captions. To facilitate inclusion of a diverse population, British sign language (BSL) interpreters signed the sessions and audience interaction, both online and in person.

Each of the workshops comprised two questions. For the barrier session, participants were asked:

1. What do you think are the barriers for patients to become involved in research?
2. What do you think is needed to break down the barriers for patients and public to become involved in research?

In the enablers session they were asked:

1. What heart diseases do you think we need more research in?
2. What can we do to help you get involved in research in Scotland?

The researchers made field notes that captured themes discussed, and these were collated by another facilitator for presentation back to the participants for comment. Patient and public participants were also able to take part in a short, filmed semi-structured interview with a CV researcher that explored experiences of the day, previous experience of being involved in CV research and perceptions of barriers, enablers, and benefits to research. Finally, we used a graphic artist to capture the findings of the day and to summarise them in a visual format.

Data analysis

Quantitative data were captured using Microsoft Excel 2016 (Microsoft Corporation, Washington, USA) and descriptive characteristics analysed.

Qualitative data were analysed using the thematic analysis. The mixed media data (field notes, audio and visual recordings) were read by two researchers (SMcH and MM) to systematically compare the content. The analysis involved open coding of the data to form temporary constructs. These initial constructs were further developed using questions asked during the workshop to generate an interactive set of concepts. The study team attended a one-day review workshop and contributed to the refinement of these concepts and the development of higher-level themes that aligned with the research questions.

Results

Quantitative results

Forty-six patients registered for the event (18 in-person and 28 online), of whom 42 attended (15 in-person and 27 online). Most patients were female (n=25, 59.5%) and 53% had been previously involved in CV research. Patients were resident in eight NHS health board areas (NHS Greater Glasgow and Clyde, NHS Borders, NHS Lothian, NHS Forth Valley, NHS Ayrshire and Arran, NHS Lanarkshire, NHS Grampian, and NHS Western Isles).

Qualitative results

Participants reported a range of barriers and facilitators to research (figure 1). They felt that ‘research involvement’ encapsulated a variety of activities that included study co-design, commenting on study design oversight and implementation, reviewing study information to improve participant understanding and readability, and participating in studies. Within these activities, participants identified three themes that were important to encourage patient involvement (communication, commitment, and value).

Communication about research involvement

Communication was the biggest barrier to getting involved in research, but was also a potential enabler. Participants reported that they did not always know how to get involved, and that the language used to promote research was not always culturally or linguistically appropriate. This included too much use of jargon and acronyms, and a lack of appropriate translations, e.g. BSL. Participants suggested that study information should include clear explanations of what is involved in taking part, and there is also a need for more feedback about results after involvement. Furthermore, participants felt that raising awareness of research opportunities should be part of routine care to help advise patients about what research is available to them immediately on diagnosis in all healthcare settings. Participants also suggested that CV research needs to learn from cancer research, in terms of how charities improve the visibility, accessibility and understanding of research. They perceived that this included the need for marketing campaigns that are not limited to healthcare settings to raise awareness of CV research and inform patients and the public about how they can get involved.

Participants suggested that improved healthcare professional (HCP) education was required to highlight the advantages and ease of involving patients in research, and create a more proactive approach to promoting research involvement for patients. HCPs should be able to explain the benefits of research to patients, rather than presenting taking part as ‘helping the greater good’. They should use simple language and ensure that people have time to discuss their experience before reinforcing that their involvement is valued. Some participants suggested that real-life patient stories about research involvement would encourage participation, and that targeting local community groups (e.g. religious groups, women’s groups, and community partnerships) would help increase diversity and engagement. Local roadshows and virtual options could increase the likelihood of engaging with remote communities. A PPI platform could build a patient research community, give access to information about clinical trials and how to sign up.

The commitment involved in research participation

Cost, family, travel requirements and time commitments were perceived as barriers to research involvement. Participants had different views about reimbursement and payment for participation. They reported that they often ended up out of pocket due to travel expenses, food purchased, and time away from work. Some participants wanted to be paid reasonable expenses for their time. Others said that payment for time would result in a loss of state benefits. Participants were often worried about the practicalities; distance and logistics of public transport (ferries, buses, trains, and aeroplanes), parking issues at research sites, and ability to have a carer accompanying them. Participation in a study may require significant time commitment, particularly if long-distance travel is involved. Spending time at a hospital was considered to be boring, inflexible, and could be physically and mentally difficult. Flexible times for participation were required for people who work, and/or have family or caring responsibilities. Researchers need to provide clear information about the expectations of what is involved in committing to research, accessibility arrangements and financial support to facilitate participation.

Feeling valued as a research participant

Patients felt that all areas of CV research were important, but expressed specific interest in research about their own condition(s). There was no specific CV disease highlighted as requiring a particular focus. Instead, patients wanted professionals to value their lived experience of CV disease including recognition of age and sex equality and the differing needs of diverse populations. People were concerned that involvement in PPI was tokenistic. They suggested that support from researchers could include openness to questions, respect, and reassurance about the value of participation. Recognition should be given to the potential positive impacts that involvement can have on patient self-confidence, and the potential benefits of access to new medical tests or treatments.

Discussion

Improved communication about research involvement, an understanding of the commitment required to participate in research, and the feeling of being valued in the research process were important to patients who attended a hybrid research engagement event. This included being adequately recompensed for out-of-pocket expenses and time. In part, these elements can be addressed by including patients at every stage of the research journey. The Health Research Authority recommend PPI at the earliest possible stage in research,¹² yet in practice our participants highlighted that this does not often occur. Our experience suggests that hybrid PPI events can work well to create a suitable environment, time, and space for participants to articulate what research they think is required, how to promote patient participation and what involvement they want. The use of professional notetakers providing online closed captions and BSL interpreters increased participation for underserved groups.

Engaging underserved communities in research activities

Recruiting diverse participants in research is challenging. Patient involvement in research must go beyond representing the interests of the well-educated white middle classes.¹¹ Currently, many demographic groups are underserved by research and their voices are seldom heard.¹³ This means they are underrepresented in population estimates and face a high healthcare burden.^4,14,15 Researchers must be supported to engage with diverse communities to ensure that research-project development reflects the needs of those who are unable, cannot, or do not wish to engage.¹¹ Events that facilitate increased representation from seldom-heard communities or traditionally excluded communities, patients, carers, and families can begin to reduce the discrimination experienced in involvement processes.¹⁶ We recognise that our PPI event was only the start of awareness-raising activities within the CV community in Scotland that will actively engage with groups most likely impacted by illness, low literacy, communication difficulties and those lacking confidence. In accordance with the INCLUDE framework, we encourage researchers to recognise that meaningful engagement requires sustained efforts to build relationships with underserved groups.¹⁷

Appropriate cost and compensation for PPI

There are cost and compensation implications to ensuring high-quality PPI. The NIHR has developed payment guidance for researchers and professionals to cost PPI into activities at any stage of the research process, which includes being transparent about what is expected from the patient, what they are being offered, how they will be paid and how their involvement will be acknowledged.¹⁸ Participants in our patient day highlighted that financial payment is not always appropriate and other methods of reward/acknowledgement may be preferred. To ensure the day was accessible to the widest audience, we used a hybrid format. This increased the logistical elements of the day, and of course the costs. While hybrid events are frequently a passive event for the online audience, considerably more planning is required to make the event a true hybrid one.¹⁹ Moderators were used to ensure that online participants were still engaged and involved. We also used BSL translators, note takers, and a graphic artist. To run these events, substantial increased funding is required when compared with a traditional face-to-face meeting. This event cost £6,000. This should be noted when applying for funding for PPI and research dissemination activities.¹⁶ Researchers and patients need to begin collaborating and building relationships early to meet tight grant deadlines and ensure that the budget for PPI is not underestimated.²⁰

Valuing patient involvement in research activities

Patients want to be valued for their role in research activities. Indeed, this could be viewed as part of a broader commitment to person-centred care. It is clear in clinical practice that the best outcomes occur when individuals believe they are listened to, supported, and empowered to make decisions.²¹ The World Health Organisation argues that people and communities should be at the centre of healthcare services, and, necessarily, this should extend to research practice.²² In this respect, it could be perceived that research is lagging clinical practice in adopting a person-centred approach. Our participants highlighted challenges in travelling to sites for research participation, the boredom of waiting at a hospital for tests, and the inconvenience of the timing of studies. A recent study has highlighted the need for increased flexibility and personalisation in clinical trials, including opportunities for hybrid participation.²³ Opportunities to improve flexibility in trial design, and to ensure participants’ input is valued, must, therefore, begin at the start of developing any research proposal.

Strengths and limitations

Our event included a self-selected group of participants who were geographically diverse, and we went to great lengths to advertise and ensure an inclusive format. We paid out-of-pocket expenses for all participants and for accommodation where required. We presented results in a range of formats that patients could access during the event and afterwards. Participants needed to commit a day of their time to be involved in the face-to-face event, but could attend as they wished if they were attending remotely. This may have excluded people with varying time commitments, such as caring responsibilities, from attending in person, and those with poor access to technology from attending remotely. Future PPI event planning should consider locality, appropriateness of invitations, the accessibility of technology and the provision of accessible formats for those most underrepresented in research currently.

Conclusion

A hybrid PPI event identified that CV patients have a strong desire to become more meaningfully involved in CV research and understood this to mean commenting on study design, study co-design, oversight, and implementation of research, reviewing study information to improve participant readability, and taking part in research studies. Participants want accessible communication that outlines how to get involved and what is expected from involvement. CV patients want to feel valued as a research participant and suggest more needs to be done to raise awareness of the personal relevance of PPI activities. Increased investment is required to improve accessibility of PPI activities. Meaningful PPI can inform and improve the quality of research. PPI events such as this provide important, safe, and supported spaces for public, patients and researchers to meet, network and explore solutions together.

Key messages

Cardiovascular patients who attended a hybrid patient and public involvement (PPI) event suggested that researchers should:

• Engage with underrepresented populations by improving the visibility, accessibility and understanding of PPI as part of the research process
• Articulate the value of PPI in terms of contribution to the research and potential personal benefits to patients
• Ensure PPI costs in funding applications are sufficient to provide meaningful and inclusive patient involvement at all stages of the research project

Conflicts of interest

None declared.

Funding

The event was funded by the NRS Cardiovascular Research Network, the NHS Golden Jubilee Hospital, Glasgow, the Cardiovascular Health Centre, Edinburgh Napier University, and the Edinburgh Napier University public engagement fund.

Study approval

This was a public engagement event and so an ethical opinion was not required, as confirmed by Edinburgh Napier University’s School of Health and Social Care Ethics Research and Integrity Committee. Participants gave written consent for audio recording of the event, photography, video recording of voluntary interviews and dissemination of findings in peer-reviewed journals during registration.

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