Volunteer engagement to inform research on cardiovascular health awareness, Canada

Abstract

Volunteers have been extensively used in health promotion programmes. However, they have been less frequently involved in the research process. In its most recent iterations, the Cardiovascular Health Awareness Program (CHAP) integrated volunteers (i) to facilitate CHAP sessions with participating patients for data collection and (ii) to evaluate the intervention. Drawing on the patient and public involvement literature, our research team included volunteers in the data collection and evaluation of CHAP sessions as part of the programme’s implementation in the province of Quebec (Canada). We sought volunteers’ formal feedback through individual online and phone interviews and through focus groups for each of the four projects conducted in Quebec. We found that volunteers provide valuable insight on the research protocol as well as patient needs. Their feedback led to several modifications to the research protocol and procedures of subsequent CHAP sessions. Changes included involving volunteers at earlier stages of the research process, adding more learning modules and practice sessions during the volunteer training and defining research priorities according to patient needs. Our methodology of engaging volunteers in the research process was useful to gain important and unique insight on patient needs and for future programme planning to modify the research process.

INTRODUCTION

The contribution of volunteers in health promotion programmes is well documented with regards to their capacity to support chronic disease management (Coull et al., 2004; Foster et al., 2007; Carr et al., 2011; Fisher et al., 2012). The inclusion of volunteers in health promotion programmes also represents a cost-effective strategy when funding allocations may be limited and a culture of volunteerism strong (Schneider et al., 2007; Carr et al., 2011). It has furthermore been found that when volunteers are similar to the population under study, they can be effective at engaging with the targeted population. As volunteers share similar experiences with the targeted population as well as similar socio-demographic characteristics based on age, gender and geography, trust and confidence can more easily be established between patients and volunteers, resulting in greater patient participation and adherence to programmes (Coull et al., 2004; Ramchand et al., 2017). The impact of peer-matched volunteer engagement is aligned with social cognitive theory, which suggests that peers are influential because patients are more likely to imitate a behaviour exhibited by someone who is a realistic model in relation to themselves (Turner and Shepherd, 1999).

Despite this evidence, little attention has been paid with regards to the potential contribution of volunteers—their particular knowledge and insight—in the research process. The Cardiovascular Health Awareness Program (CHAP) explicitly incorporated volunteers to facilitate sessions with participating patients for data collection purposes and to evaluate CHAP for future improvements. Through the collection of volunteers’ observations and comments after their participation as programme facilitators, we hoped to gain important information on CHAP’s research processes and volunteer perceived needs of the population under study to improve future iterations of CHAP.

The aim of this paper is to report specifically on volunteer feedback on their participation in four distinct research projects aiming at implementing CHAP in Quebec (Canada). We hypothesized that volunteers can make a meaningful contribution to the research process including data collection as well as evaluation, enabling the research team to gain important insights into the needs of the target community and to modify the interventions accordingly.

BACKGROUND: CHAP

Over the past 18 years, members of our research team developed, implemented and evaluated several different iterations of the CHAP (www.chapprogram.ca). The objective of CHAP is to raise patient awareness of cardiovascular health risks and encourage better adherence to pharmacotherapy and lifestyle changes. CHAP is a community-based programme that mobilizes communities, family physicians, community pharmacists and local programmes and agencies to engage in cardiovascular health awareness and management activities for adults. CHAP has been shown to reduce participants’ blood pressure, optimize their drug regimens, identify undiagnosed or uncontrolled hypertension and reduce cardiovascular-related hospital admissions in the communities where it has been implemented (Chambers et al., 2005; Kaczorowski et al., 2008, 2011). A comprehensive economic analysis showed that CHAP can reduce cardiovascular disease-related hospitalization costs at the community level without a corresponding increase in overall healthcare costs (Goeree et al., 2013). CHAP has received recognition at national and international levels and is used as a major source of evidence to support the screening for hypertension recommended by the Canadian Task Force on Preventive Health Care and the US Preventive Services Task Force.

CHAP relies on locally recruited age-matched volunteers to, (i) facilitate data collection (e.g. assist with accurate measurement of participants’ blood pressure and completing a cardiometabolic risk profile, including a risk evaluation of developing type 2 diabetes), (ii) provide participants with educational messages about lifestyle modifications and (iii) recommend locally available free or low cost resources. A previous survey of CHAP volunteers’ perspectives showed a high level of satisfaction with their participation in the programme (Karwalajtys et al., 2009). The majority of volunteers enjoyed interacting with participants and gained new knowledge. In addition, most volunteers felt that they had access to all the resources they needed to do their jobs well, that the procedures to follow were clear, and that any issues were always well handled in a timely manner.

Adapting and implementing CHAP to new settings and for different populations

The CHAP team has been actively working towards reaching its goals of adapting the programme to different populations and settings and working towards identifying the optimal conditions for the programme’s sustainability and scalability, to make CHAP available across Canada and to significantly improve the prevention and management of cardiovascular diseases. The CHAP research team conducted a series of projects to test the CHAP model for the first time in the province of Quebec (Canada) where the majority is French speaking.

As the programme was originally offered in community pharmacies in the province of Ontario (Canada) to patients aged 65 and over, we have established close collaboration with local decision makers in the province of Quebec to translate and adapt the material to French. CHAP has now offered four iterations of the project to different populations (see Table 1). Specifically, offering the programme to: patients aged 40 and over registered in interdisciplinary primary care clinics (first project); patients registered in a regional programme aimed at prevention and management chronic disease (second project); adults on a waiting list to access a family physician (third project) and seniors living in subsidized social housing (fourth project). These projects received ethics approval from the Centre intégré de santé et de services sociaux de Laval and the Centre de recherche du CHUM.

Table 1:

Description of CHAP iterations in the province of Quebec

Title	Year	Description	Number of participants
CHAP in primary care clinics	2015	Patients aged 40 and over registered in interdisciplinary primary care clinics	117
CHAP for participants of a prevention and management of chronic disease programme	2015–16	Patients registered in a regional prevention and management chronic disease programme	141
CHAP for adults on a waiting list for a family physician	2015–16	Adults on a waiting list to access a family physician	281
CHAP for seniors in social housing	2018–19	Seniors living in subsidized social housing	220

Drawing on insight from CHAP iterations in other Canadian settings, we involved volunteers in the research process and evaluation of each of these projects. In total, 68 volunteers were recruited through advertisements in local newspapers and by collaboration with local volunteer organizations (e.g. Laval Volunteer Bureau). The organizations send requests for participant information, conduct interviews with candidates and facilitate criminal record checks. Volunteers have been geographically and age-matched to the CHAP patient population. When chosen, volunteers have been required to participate in a 1-day CHAP training session, facilitated by nurses and the research team. The training session covered all aspects of facilitating CHAP sessions, including theoretical information on health promotion and disease prevention, the use of consent forms, patient questionnaires and hands-on practice with the blood pressure measuring devices used during sessions.

MATERIALS

In each project, we sought formal feedback and input from volunteers through individual online questionnaire or phone interviews following their training session and through focus groups after their participation. Closed- and open-ended questions were used in the post-training questionnaire. The post-training questionnaires and interview guides for the post-intervention focus groups were similar across different projects. Semi-structured interview techniques were used in the focus groups. The topics covered were feedback on both the training and session materials provided, consent forms, time and location of the sessions and contact with participants. To evaluate the data, volunteers’ answers from the questionnaires and focus groups were transcribed and organized according to themes of the respective interview guides. Emerging themes were classified separately or integrated to the existing categories. The themes were then analysed and evaluated by CHAP researchers until conceptual saturation was reached. Our interpretation of the data was based on our interest in understanding how volunteers’ engagement in the project can inform the research process (e.g. their needs as volunteers, materials used).

RESULTS

The results from the questionnaires and the focus groups identified how volunteers informed and contributed to the research process, namely on how to improve the training session and CHAP sessions with participants. In addition, the volunteers provided important insight on the needs of participating patients. The results section summarizes the volunteers’ comments, as well as their suggestions for improvements. We also present how the feedback shaped the adaptation of the programme for future CHAP iterations.

Volunteer training sessions

Volunteers reported that the training should include more time spent on explaining medical information related to cardiometabolic health because not all volunteers understood medical terminology. Also, they suggested more hands-on practice periods, mimicking the sessions to facilitate. Subsequently, several changes were made to the organization of CHAP training sessions and materials used after volunteers’ input. Specifically, the length of the training session was reduced to half a day and the content focused more on the responsibilities and tasks of the volunteers during the sessions and less on theoretical information (e.g. defining what is prevention and health promotion) but included basic definitions of cardiometabolic diseases.

Many volunteers shared their confusion with regards to a good and efficient organization and management of patient questionnaires and order of study measurements during the sessions they facilitated. Some mentioned being confused as to when to measure waist circumference, calculate body mass index and measure blood pressure with the automated blood pressure device. The discussion during the first focus group highlighted several approaches to the volunteers’ workflow during the sessions they facilitated, which the CHAP research team noted. For example, the favoured order seemed to be to take the physical measurements first then measure the blood pressure, followed by the review of the questionnaires and calculation of the patient body mass index. We subsequently reviewed the organization of the sessions to align with volunteers’ preferences.

CHAP sessions and facilitation: materials and patient needs

Volunteers had the responsibility to facilitate sessions with participating patients, which served as our primary source of patient data collection. Volunteers noted, after the first project, that some female patients felt uncomfortable having physical measurements taken by a male volunteer. As such, we sought thereafter to match volunteers and participants on gender.

After the first and second projects, volunteers noted that participants were taking a long time to complete the consent form, which caused delays in the sessions. The consent form was eight pages in length and took at much as 15 min to fill out for some participants. According to the volunteers, it was also a very complicated consent form that did not match the literacy level of participating patients. Subsequently, we worked with the Research Ethics Board to shorten and simplify the consent form for patients. This was especially important for our project in subsidized social housing (fourth project) where literacy levels are very low. Not only was the consent form reduced to three pages long, but the literacy level was also lowered to elementary school level. As such, during the last focus group conducted following the most recent CHAP pilot in subsidized social housing, volunteers reported being satisfied with the consent form, although some participants took some time to complete it (Volunteers had to read the form for some participants).

During the focus group after the first project, volunteers made several suggestions related to the formulation of different questions on the cardiovascular risk assessment and the flow of CHAP sessions (e.g. time management and sequence of presentation of different tools). We took these comments into account when developing risk assessment forms in following projects, making several changes to the original forms.

Volunteers shared that some materials provided during the CHAP sessions were not adequate for proper use. For example, there were insufficient extra-large cuffs for the participants when measuring blood pressure, as most participants required a larger size. Extra-large cuffs were ordered and provided at each CHAP session. Volunteers also mentioned that including more handouts on diabetes would be useful as most participants were interested in that information, especially after having completed the CANRISK questionnaire, which evaluates the risk of developing type 2 diabetes. Lastly, volunteers mentioned that they quickly ran out of brochures as participants often took brochures for their spouses or friends. Going forward, our research team ensured that volunteers were provided with large amounts of comprehensive brochures, including many with information on diabetes. Because it was always the volunteer who was in charge of handing out leaflets and addressing concerns raised by participants, they represented the primary conduit of detailed information between the participating patients and nurse coordinator on site as well as the research team.

Finally, the volunteers were able to give their impressions on the choice of locations and spaces used to hold the individual CHAP sessions. For example, they mentioned that parking was expensive and that may have prevented some patients from participating. We started reimbursing participants for the cost of parking as part of the third and fourth projects.

DISCUSSION

Having a unique perspective and a privileged link with participants in the research process, the volunteers have made it possible to incorporate several practical and applied innovations to CHAP projects in Quebec. We were able to improve and tailor our volunteer training programme, facilitate patient data collection during sessions, as well as better understand patient needs.

Our use of volunteers in the research process reflects the recent trends in community-based participatory research (CBPR) and patient and public involvement/engagement in research (Brett et al., 2014; Domecq et al., 2014; Boote et al., 2015; Boivin et al., 2018). Patient engagement in particular is championed by the Patient-Centered Outcomes Research Institute in the USA and the Strategy for Patient-Oriented Research in Canada, country-wide initiatives to fund research on patients’ priorities and needs by engaging patients as partners. It is argued that by involving patients and the public in research, the quality of the research and its applicability to patients increases, and that it accelerates translation of findings into clinical practice. Such an engagement ensures that research is more accountable and transparent, provides new insight and ensures that research is relevant to patients’ concerns.

Our CHAP iterations with volunteers highlight a successful and innovative use of volunteers as community stakeholders. Their insight contributes directly to the research protocol and process, informing us on best practices. In addition, through their engagement, we were able to indirectly gather data on the population under study. As volunteers resemble the targeted patient group based on socio-demographic characteristics, volunteers were able to inform us on best intervention practices according to patient needs in two ways: first, practically, they were with the patient for up to an hour in the CHAP session, serving as the first collector of participating patients’ feedback; and second, participating patients may have felt more comfortable to share certain information with peer volunteer rather than a healthcare professional due to their reluctancy to share concerns or ask questions they may feel are inappropriate to the latter (Garcia et al., 1997; Peel and Warburton, 2009). For example, they informed us that for patients to relax during the sessions they enjoyed talking and sharing throughout the session. They also noted that patients prefer to have their physical measurements assisted by a volunteer of their own gender. Volunteers shared that some patients were uncomfortable when a volunteer of the opposite gender took physical measurements, which made this task difficult. Such an observation on their behalf led us to improve various aspects of the intervention, such as prioritizing volunteer-patient gender matching for BMI assessments. Had volunteers not informed the research team of this experienced malaise, we would not have known of this as we did not initially collect information on gender-matching preferences nor was the research team on-site during the one-on-one consultations.

We believe that our approach to patient and public involvement/engagement also addresses two common challenges often cited in this literature: first, that the involvement can be burdensome for public participants and second, that the involvement may be perceived as tokenistic (Domecq et al., 2014; Boivin et al., 2018). To the first concern, we found that by having constant support of the research team and the presence of community nurses on site during the facilitations helped volunteers feel less burdened. In addition, as we modified our volunteer training sessions over time, volunteers felt more and more equipped and knowledgeable to facilitate the sessions. And finally, to the second concern, by having volunteers involved at every step of the research process—training, data collection, and especially in the evaluation—they felt they were true contributors to the research.

CHAP tries, as much as possible, to recruit volunteers who are age- and language-matched and who reside in the same geographical area as the target patient population. Patient-peer matching in this way aligns with social identity theory, which posits that individuals will be influenced in their actions and behaviours by people who share similar social and cultural characteristics (Peel and Warburton, 2009). We abided to a form of homogeneous purposeful sampling methodology to recruit volunteers who resembled the patients in our CHAP sessions (Patton, 2002; Palinkas et al., 2015). Although this type of methodology often renders challenges related to sample representativeness, generalization of results and researcher bias, we believe that the local resources used to recruit the volunteers, such as the Laval Volunteer Bureau, enabled us to obtain a matched sample for our research purposes and avoid researcher bias. Although we acknowledge that our volunteers may be different from participating patients in terms of socioeconomic characteristics and marital status (Vézina and Crompton, 2012), the patient-peer matching successfully responded to patient needs as reported in patient feedback.

Our findings with a homogenous sample of patients and volunteers enable us to make theoretical conjectures with the patient and public involvement/engagement literature: if the volunteers represent or resemble the community under study, they too, through their engagement in the research process, may represent key community stakeholders. An understanding of volunteers as community participants broadens the notion of public and patient involvement/engagement, while still supporting research results for targeted communities.

Although we note the positive features when including volunteers in research, challenges can arise. In our case, there were concerns regarding the roles and responsibilities of volunteers, referring to what they would be permitted to do (e.g. providing information, assisting participants in measuring blood pressure) and not permitted to do (e.g. making clinical recommendations, diagnoses). Complementing this set of problems is the notion that it may be difficult to wear the ‘dual hat’ of community member and researcher (although not fully a researcher), especially when having to ensure consent with the participants, imposing a potential distance between volunteers and participants (Peacock et al., 2011). We reiterate that the presence of community nurses on site during the facilitation sessions did reduce this problem. Future research is also needed to test the feasibility of recruiting and managing a large number of volunteers for similar programmes.

CONCLUSION

Including volunteers in CHAP iterations had a two-fold objective: first, to facilitate CHAP sessions for patient data collection, and second, to evaluate the CHAP research protocol. Our findings showed that volunteers highlight strengths and weaknesses of the research protocol (e.g. materials, training) and provide insight on patient needs in relation to participation in research and cardiovascular health. These findings provide practical insight for CHAP, namely on improvements for future iterations of CHAP and on a better understanding of patient needs, and also new insight, as we contribute theoretically to broadening our understanding of CBPR and public and patient involvement/engagement frameworks to include volunteers. We encourage future research programmes to engage with volunteers in their methodology to gain important feedback on the research process and insight on patient needs.

FUNDING

This work was supported by the Canadian Institutes of Health Research (grant number: 128264).