Consumer involvement across the research process

‘It is relatively unusual (to shape the direction of the research) right at the beginning, as so often the whole thesis is designed and then the consumers are brought in afterwards’. ​Mary Potter, consumer advocate

The vision for and commitment to a longitudinal approach to consumer engagement is reflected in three major strategies: (1) project conceptualisation, (2) governance structures and (3) patient advocate involvement in shaping research direction, data analysis and dissemination.2 6 7

The NHMRC grant proposal was developed in collaboration with Health Consumers NSW (HCNSW), the consumer representative organisation for NSW, Australia. AB, Executive Director of HCNSW, is an associate investigator on the project and a member of the project steering committee ensuring consumer representation in the project governance structures. The commitment to prolonged consumer engagement is embedded as a dedicated project aim, and, as one central approach, a consumer reference group (CRG) was formed to ‘enhance the contribution of consumers to the establishment of safe and effective test result management systems’.10 To break down barriers to participation for patients without any training as consumer representatives,3 11 the researchers gathered and combined the insights of frontline patients accessing emergency department (ED) services and experienced consumers with research or health system knowledge.

Consumer representatives were recruited to a CRG and were integral attendees at a stakeholder forum held to launch the project.12 The half-day forum allowed the five attending consumers to shape the direction of the research project. Their insights highlighted the need for consumers to be involved on a micro-level—in managing their own healthcare—and on a macro-level—driving change and innovation in health services and policy development.12 Their insights informed further qualitative data collection, for example, questions for the subsequent semi-structured interviews conducted with clinicians, radiology and laboratory staff, and frontline patients across three NSW EDs. These interviews served to map and compare work processes and to describe patient experiences in the diagnostic test management cycle.

Qualitative interview data were initially analysed by the research team, before launching an innovative consumer-driven programme to involve members of the CRG as active research partners in a full-day Data Analysis Workshop.11 During this workshop, patient advocates and researchers worked in three groups studying the interview transcripts; some consumer representatives assigning open codes in the transcript margins. In the group discussions that followed, participants shared their initial impressions. Researchers facilitated discussions to identify patterns and themes, which were captured on post-it notes and/or butchers paper to share with the larger group.

As in the examples outlined in table 1, patient advocates (often unknowingly) validated, concretised and questioned themes previously identified by the researchers. They also added their themes thus increasing understanding and interpretation of data from their lived experience. The full analysis and findings from the qualitative data analysis workshop are currently being prepared for publication.

Members of the CRG and HCNSW are actively involved in the dissemination of findings from the workshop through academic and general outlets, as co-presenters at academic conferences,13 coauthors for academic journal articles12 including this paper and featured guests in blog posts.14–16 In addition, the CRG identified the need for collaborative work to develop policy briefs to promote the translation of research findings and drive practice change which is ongoing.

Capacity building

​“I did the HCNSW consumer training which gave me a better understanding and appreciation of what we are asking of the patient advocates”. ​Mary Dahm, consumer coordinator and project lead

Because the project is driven by the vision of prolonged consumer engagement, the project lead took on the dedicated role of consumer coordinator, responsible for recruitment of patient advocates to the CRG and serving as a first point of contact and liaison between patient advocates and the research team.17 The consumer coordinator took an academic approach via immersion in the relevant literature on consumer engagement in health services research and additionally sought to gain firsthand, practical experience by becoming a patient advocate. By completing the consumer training18 and volunteering as a patient advocate in the local health district, the researcher gained crucial experience and an understanding of potential pitfalls for consumer involvement in research.

The research team is continuously involved in activities to build their capacity for consumer engagement19 and keeps abreast with the latest developments in the field by attending and presenting at local patient-centred conferences (eg, Patient Experience Symposium),20 21 and attending dedicated institute seminars and meetings with national and international leaders in the field (eg, a representative from Canada’s Patient and Community Engagement Research programme,22 or the Australian peak bodies (Consumer Health Forum (CHF), HCNSW)).

Targeted recruitment

​“Your presentation21 certainly resonated for me. I’m very interested in consumer/carer access to test results and would be happy to participate in a consumer forum looking at what your research has found”. ​Dean Martin, consumer

Careful selection of consumers based on their particular experiences, training and skills can facilitate successful engagement and optimise project outcomes.6 7 To recruit suitable members for the CRG, targeted advertisements outlined the scope of the project, time commitments, reimbursement and relevant experience (ie, familiarity with test result management in a hospital environment as a patient or carer). Advertisements were distributed internally among the members of HCNSW, the consumer council of one local health district and publicised on the HCNSW online presences (website, newsletter, Twitter). Additional informal recruitment occurred via presentations of initial project findings at conferences oriented towards patients/health consumers,21 attracting interest from patient advocates who volunteered involvement.

The recruitment approach attracted consumers with varied sets of skills, knowledge and experiences related to consumer engagement and/or research while simultaneously having personal experience as patients and/or carers.18 23 Furthermore, targeted recruitment meant that participating patient advocates could provide diverse perspectives, for example, through having received training regarding the Australian health system, exposure to or previous participation in research projects or substantial experiential knowledge of navigating the health system as a patient or carer. Interested participants contacted the consumer coordinator who followed up with an informal phone call to discuss the project in more detail and to ask questions. Phone calls were deliberately kept informal to facilitate trust and relationship building.3 6 7 Based on mutual agreement, and once all questions had been answered, consumers were officially recruited as a member of the CRG.

Support structures

“For a patient to be included in medical research can be daunting, but being prepared and informed gave us a sense of ease and belonging. [W]e were all able to proceed to examining the pathways of testing at a much more effective level”. ​Maureen Williams, patient advocate

As an innovation to consumer engagement in health services research, the interactive full-day Data Analysis Workshop was held to allow consumers to provide their insights and interpretation of relevant topics, as well as to develop qualitative data analysis skills.7 Apart from drawing on academic and grey literature to identify best practice, the consumer coordinator reached out via Twitter and received >10 real-world tips and tricks for successful consumer engagement from researchers and consumer representatives.24 Based on the obtained learnings, patient advocates were provided with support structures to build their capacity as active research partners11 well ahead of the actual workshop. Supporting structures included targeted written documentation before the event, direct and immediate guidance from researchers in the lead up to and during the workshop, team-based analysis exercises with the input of other consumers and researchers, and joint debriefing, feedback and support in the dissemination of workshop findings.

On recruitment to the CRG, participants received supporting documents regarding the project. Several weeks ahead of the workshop, consumers received targeted information outlining multiple possible topics to be analysed during the workshop. To facilitate a truly consumer-driven approach, patient advocates were asked to rate possible topics for analysis by importance.2 Two topics were selected based on their ratings, and consumers received further detailed briefing documents including:

• a brief outline of roles and expectations for consumers and researchers;

• an introduction to qualitative research methodology and analysis principles;

• excerpts from interviews to allow consumers to become immersed in the data before the workshop25;

• administrative information (eg, agenda, map of the venue).

These document were provided in either digital or paper formats as per individual preferences.4 Patient advocates appreciated the distribution of briefing documents, which according to their comments on open-ended feedback forms were ‘excellent’, ‘timely’ and gave them a ‘good overview of opinions’, and ‘time to think about the issues’.

The workshop itself included 10 consumers and 5 researchers who split into three groups. Each consumer group was supported by two researchers to facilitate discussion, take notes and guide the analysis of each topic. Immediately after and in the weeks following the workshop, consumers and researchers participated in joint debriefing and feedback activities which are strong indicators for ongoing successful engagement.6

Consumers appreciated the researchers’ openness to further input following the workshop. Their feedback reflected that all consumers were interested in ongoing collaboration as research partners. Patient advocates offered suggestions for improvement such as inclusion of frontline patients, more time for networking and further research methodology workshops. Especially the latter sentiment, for increased research capacity building, was echoed by the researchers with further activities currently being scoped but contingent on available funding. As part of the debriefing activities, consumers also reviewed a short summary of the workshop findings and a few wrote a short reflective account of their experience in the workshop at the researchers’ request. These reflections formed the basis for current and future conference presentations13 and academic publications, including this paper.

Feedback forms and reflections highlighted that in the experience of the involved consumers the overall level of care and support was unprecedented and regarded as testament to the fact that, in this project the patient experience was being valued. The inclusion of patients was a hallmark of the project, clearly moving beyond tokenism. Contrasting their experience with participation in other listening forums and research projects, consumers perceived their involvement as more positive and engaging and praised the clear focus on the aims of the workshop and the facilitated analytical discussions.

Financial acknowledgement

​“The consumers were treated probably better than the actual researchers from the point of view of reimbursement for our time, concerns about parking and how to access the meeting. You see that gives an indication and reflects the value of our involvement”. ​Mary Potter, consumer advocate

While researchers are employed in paid positions to conduct research studies, consumers are often expected to essentially consult for free.4 While more and more recommendations exist on how consumers should be remunerated or reimbursed for their time, no binding national policy requirements exists in Australia.2 Further complicating the issue is that patient advocates are often people with chronic illness or disabilities who may receive a range of government pensions that they could lose if their earnings exceeded a certain (usually very low) threshold. The researchers leading this project wanted to acknowledge the value of the consumers’ lived experience and experiential knowledge.26 Thus, in addition to establishing an inclusive programme of research emphasising mutual capacity building19 27 and providing catered tea breaks to encourage networking,6 researchers followed the HCNSW recommendation28 and offered financial compensation in form of shopping vouchers commensurate with the longitudinal nature of the engagement and duration of CRG meetings.6 We provided further financial support via taxi vouchers to ensure that access to transport was not a barrier to participation. Financial acknowledgement was often unexpected but well received by consumer participants. As advocated by the most recent ‘Statement on Consumer and Community Involvement in Health and Medical Research’ coauthored by CHF and NHMRC,8 organisational and research project budgets need to plan adequate funding to ensure long-term consumer engagement across all research stages.9 19