Engaging consumers in health research: a narrative review

Healthcare consumers and providers have been seeking closer partnerships under patient- and family-centred frameworks for some years now.^1,2 There is an increasing body of evidence that has linked a patient–provider partnership approach to care and clinical, cost and patient satisfaction outcomes.^3–5 Providers have been seeking to blend individual patient preference with research findings and clinical expertise to provide care that is evidence based since the early 1990s.⁶ More recently, however, attention has shifted to the engagement of healthcare consumers in the work of generating research findings, thus extending the scope of the patient–provider partnership approach beyond care provision to the development of the evidence bases that inform best care practice. In this sense, the promotion of consumer and community engagement (CCE) in research can be seen to represent the joint aspirations of consumers and providers. It aligns the two movements that have influenced healthcare in recent decades, namely patient- and family-centred care (PFCC) and evidence-based practice.

Consumer engagement is the active public involvement in research priority setting, question development, methodological choice and translational inquiry.⁷ Underpinning published definitions of CCE in research is language that emphasises research being conducted with or by community members, not research that is conducted on, to or about them.⁸ Engaging consumers and communities in health and medical research is now a core goal of both speciality-specific and primary health research communities around the world. Australian, European and North American funders now increasingly require evidence of CCE in any successful research grant submission.^9,10

Beyond the conceptual alignment of PFCC and evidence-based practice, there are imperatives driving such a fundamental shift in the way best practice in healthcare research is understood and actioned by its practitioners and prescribed by its funders. Howe⁷ highlights moral, methodological and policy reasons for CCE in research. In the moral context, the ‘nothing about us without us’ principle sums up this imperative. It is now widely accepted that involving consumers and community members in the prioritisation, conduct and governance of any activity that affects their health and quality of life outcomes is simply the right thing to do. More practically, consumer engagement in methodology development has the potential to positively affect study design choice, recruitment rates and the flow of study processes. CCE is likely to lead to better quality studies.¹¹ In policy terms, increased engagement has the potential to positively affect community ownership of research findings, translation of those findings (e.g. into practical solutions) and community benefits.

Although the reasons for a contemporary focus on CCE in research are substantial and persuasive, there remain to date limited examples of published research projects that reflect genuine and robust consumer–provider coproduction.¹² This may be due to a lack of awareness among healthcare researchers as to the potential benefits associated with greater CCE⁷ or a lack of clarity about how best to proceed under a consumer- or community-engaged approach. It may also be due to under-reporting of CCE-related aspects of published project work,¹³ potentially caused by a lack of explicit guidance from journals to authors regarding the inclusion of CCE aspects of projects in submitted manuscripts. Research on how best to engage consumers and communities and the effects arising from such activities is increasing, although still modest. There are as yet few Australian studies on CCE in research, although interest and commitment levels are high, as evidenced by the inclusion of CCE-related goal setting in many key strategic groupings^14,15 and the positioning of CCE as an essential criterion in competitive mainstream research grant schemes. Against this background, the present paper reviews the CCE literature with an emphasis on findings that shed light on the benefits, barriers and enablers of CCE in research.

The aim of this review was to identify the key themes regarding CCE in health and medical research. This paper investigates the following questions: (1) what are the benefits of consumer engagement in health and medical research; and (2) what are the barriers and enablers to meaningful consumer engagement in health and medical research?

A literature review was conducted in August 2018. The databases and search engines used included Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE, EMBASE and Google Scholar. The search terms and strategy are given in Box 1. Articles that specifically addressed at least one of the following elements of consumer, community and stakeholder engagement in health and medical research were included: benefits, barriers and enabling factors.

Papers were included in the study if they were published in English and addressed one or more of the review questions. Papers published in the past decade were prioritised, with the exception of a small number of papers published before 2008 that provided substantial insight. Opinion articles were excluded.

After completing the initial search, general reading and citation tracking, a second search of the grey literature was conducted, adding to the total number of papers retrieved for review. After further reading, it became apparent that the literature did not adequately address the barriers, enablers and strategies for engaging with consumers from culturally and linguistically diverse (CALD) backgrounds, Aboriginal and Torres Strait Islander people and socially disadvantaged communities. A third search was conducted to address this gap, and the final search results were reviewed by two independent reviewers (AA, KC). The third search included the terms ‘Aboriginal and Torres Strait Islander’, ‘culturally and linguistically diverse’, ‘health AND research’ and ‘community OR consumer’. Eight healthcare consumers known to have been engaged in research in the Sydney area were approached for informal discussion about their experience of CCE in research.

Of the 121 papers identified and reviewed, 37 were included to inform the content of this review paper (Table 1).^{11,12,14–48} The 37 documents included literature reviews and systematic reviews, research articles (qualitative, quantitative, mixed methods and evaluation), government documents, guides and reports. The reports offered the results of consultations and surveys of consumers and researchers engaged in health research in Australia and the UK. The included research studies often used a combination of methods, such as semistructured interviews, consultations, workshops, focus groups and questionnaires.

Table 1.  List of publications informing narrative review

There is increasing acknowledgement of the benefits experienced when engaging consumers and community members in the research that affects them.¹² Benefits include an improvement in research relevance,^12,14–22 recruitment and retention of study participants,^{12,15,23–25} more efficient dissemination²⁶ and research translation,¹⁴ as well as greater diversity within the research team.¹² Benefits can be specific to consumers, researchers or both.

A prominent benefit for researchers is gaining fresh insights from hearing the perspective of those with the lived experience of the health condition being researched, or their carer.^16,19 Ensuring that the research purpose and outcomes are grounded in the real-life experiences of consumers is considered an invaluable benefit, improving research relevance and acceptability.^16,18,19 Engaging consumers provides an opportunity for the researcher to be alerted to issues in the research aim, design, recruitment strategy, outcome measures, consent process and ethics.¹⁸ Consumers provide input into study assessment tools, creating more user-friendly and accessible versions.²⁷ Engagement allows for recruitment, data collection techniques and retention strategies to be revised and improved.^{12,15,23–25} Consumers may provide suggestions on how to increase the effectiveness of recruitment by revising proposed recruitment methods¹² or provide suggested reasons why recruitment numbers are low.²⁰ A study on patient engagement in mental health research found that trials involving consumers in the design or implementation of the research were 1.63-fold more likely to achieve recruitment targets than trials that simply consulted consumers, and up to 4.12-fold more likely to achieve targets if the level of consumer involvement was high.²⁴ Engaging people from specific communities, especially those from CALD communities, improves recruitment because people speaking the same language tend to invite their peers.²⁸ Consumer engagement may also lead to a greater diversity in the research team, providing richer and more relevant research.¹²

Consumers benefit greatly from engaging in research when capacity building activities are built into the process. Reported benefits include gaining new skills, such as data collection and analysis,^11,12 improved access to information on current treatment or management of their illness and problem-solving abilities relating to their illness,¹¹ as well as increased confidence and empowerment upon stepping into a role in the research community.^{11,16,17,20,27} Notably, capacity building is an essential element of Aboriginal and Torres Strait Islander health research, with community members learning research skills, being mentored and supported and having employment opportunities directly linked to the research project.^29,30,49

Beneficial to both the researcher and the consumer is a strengthening of research relevance,¹⁶ translation¹¹ and improved research ethics,^12,15 as well as the potential for wider societal benefits as a result of greater community support of research.^12,15 Engagement increases the likelihood of the research being relevant to those most affected.¹⁶ Sharing findings with consumers in an appropriate and accessible format, tailored to particular consumers, increases the uptake of research findings among those consumers.^11,19 Consumers can provide valuable input in reviewing ethics applications, improving ethical standards by seeing issues that are not immediately obvious to researchers.¹² Engagement fosters a mutually beneficial relationship that can lead to broad societal health benefits. When trust is built between consumers and researchers, consumers sceptical of research may cultivate a more positive attitude and greater understanding of research, leading to improved research literacy¹⁵ and wider community support of research itself.^11,14,19

Australia does not have a national strategy to implement consumer and community engagement in health research,³¹ and funding bodies have only recently begun to prioritise consumer-driven research.¹⁰ The key barriers to engagement are time and resources. Structural barriers, such as limited organisational policies and support, lead to a lack of time, resources and capacity, and subsequently tokenism. Other barriers include researchers’ negative attitudes, consumers finding researcher language inaccessible and poor clarification of roles. Table 2 lists the key themes located regarding barriers to consumer engagement, often experienced by both researchers and consumers.

Table 2.  Barriers to consumer engagement

Interrelationships may arise between barriers, most evidently between the challenge of time, resources and tokenism. Researchers who engage with consumers on a superficial level could be doing so due to lack of time, resources or capacity for engagement, or even scepticism of the benefit of consumer input.^32,37 Given that a lack of time for researchers to build relationships and tokenism in engagement are the two most prominent barriers, it is likely that they are related. Lack of relevant training for researchers may also lead to tokenism, stifling their capacity to effectively engage with consumers in research.

Importantly, some barriers are pertinent among marginalised populations, such as CALD communities, the elderly, Aboriginal or Torres Strait Islander people and low-income earners. Particular attention should be paid to the barriers preventing the engagement of marginal groups, because there is strong evidence to suggest that White, middle class, educated males dominate health research, whereas those who are socially disadvantaged, elderly and from CALD backgrounds are under-represented, compromising research generalisability.³⁹ Low English proficiency and low health literacy are some of the key barriers faced by some people in the CALD community, whereas Aboriginal and Torres Strait Islander people may not trust researchers due to past exploitation.³⁸

Key facilitators of engagement exist at both the individual and structural level. At the individual level, consumer engagement is enabled by early and fit-for-purpose engagement, the use of accessible and culturally appropriate language,^14,35,40 allowing time to plan,⁴¹ a flexible approach,^15,16,36,42 inclusivity of diverse groups,^14,35 face-to-face meetings^11,43 and the number of consumers involved.³³ Involving consumers as early as possible in the planning stage is an important facilitator of successful engagement.^{14,18,23,33,35,42,44} Early engagement allows consumers to set research priorities, increasing effects on the design and applicability of the research,^23,26 as well as providing time for the researcher and consumer to build mutual understanding,³⁶ clarify roles and negotiate consumer contributions,^26,33,42 solve any issues early on and ensure sufficient budgeting.³⁵

It is recommended that a minimum of two consumers is engaged to prevent intimidation and isolation^15,33 and to maximise input.⁴⁴ Planning the appropriate type of engagement for the specific research and population context fosters engagement,³³ as does acknowledging that ‘one size does not fit all’ and being open to a range of strategies.^33,40,43 A generally flexible approach allows for any unexpected changes in needs and prevents roles from becoming too prescriptive.^15,16,36,42 Flexibility in time is especially important in research conducted with Aboriginal and Torres Strait Islander people, where plans may need to change due to unforeseen community events.^29,45 Researchers’ positive attitude and openness to hearing different perspectives is a key facilitator,³² alongside good communication skills and regular correspondence.³⁵ Meeting face to face rather than over the telephone is suggested,¹¹ particularly in mental health research and studies involving under-researched communities, because face-to-face contact provides a more personal connection and improves familiarity with the researcher.⁴³ Using accessible and culturally appropriate language according to consumer need is useful, especially among CALD consumers^23,40 and Aboriginal and Torres Strait Islander people.²⁹ In some cases, engagement is facilitated by written materials being translated into the consumer groups’ language.³⁸

Structural enablers of consumer engagement include resource allocation,¹⁶ training,^15,16,32 organisational commitment in the form of supportive culture and policies^18,46 and engagement being a requirement of research funding schemes.^17,22 Providing adequate resources for engagement is a major contributor to success because it signals to researchers that engaging research end-users is valuable.^{11,14,16,41,47} Resources can come in the form of funds to cover consumer expenses,^23,35 commitment to a staffed consumer liaison position,^18,48 provision of guidelines and practical tools or training.²² Training in consumer engagement helps overcome common misconceptions, improves understanding of barriers to engagement and provides both the researcher and consumer the skills to work in partnership.^{14–16,23,32} Consumers may be trained in specific research skills, enhancing their abilities to support the research, whereas researchers may benefit from group facilitation, interview, focus group and public consultation training.^23,44,46

Seven consumer representatives with the lived experience of a medical condition engaged in health research and one community engagement advocate discussed their experiences with two consumer advocates from the Sydney Local Health District. The experiences of enablers and barriers of consumer engagement in health research largely aligned with the findings from the published literature, and provided real-life examples of how incorporating CCE in research can succeed or falter. The key enablers in the consumers’ experience were organisational commitment (e.g. ‘the key is having support at some of the top levels’), researchers’ belief in the value of CCE, early involvement (e.g. ‘If I get involved after the design stage…then they typically have to go back and rewrite the ethics application’), the use of accessible language and time. One consumer representative reported that ‘the more important driving factor is you’ve got to believe that there’s value in having consumers involved in research’. At times consumer representatives reported their experience of researchers not considering the value of consumer input, and researchers tending to leave the consumer to ‘rubber stamp something’ once studies were already underway. Ways in which consumers felt valued included being acknowledged (e.g. at the beginning of presentations and in publications), being asked their opinion on relevant matters, being provided training opportunities, being paid for their time and researchers and clinicians being open to helping consumers understand the research. Several consumers highlighted the need for both consumers and researchers to be trained. Almost all consumers experienced inadequate funding as a barrier to their engagement. Some consumers found that researchers’ insensitivity to the consumers’ medical condition limited the consumer engagement experience by putting an emotional and mental burden on the consumer to repeatedly explain their lived experience. The lack of diversity of consumers was also highlighted as an issue, with consumers saying that it is rare to find people from regional areas and people from non-White Anglo-Saxon backgrounds, in a consumer role. Themes raised in the discussions that had not been highlighted in the published literature included the need for consumers and researchers to work in close and ongoing partnership, and the power of the personal commitment of ‘champions’ (i.e. individual researchers or clinicians who actively supported consumers by providing them with opportunities to contribute).

The published literature and case series of consumer representatives provides a cohesive picture of the benefits, barriers and enablers to engaging consumers in health research. Although the benefits of consumer engagement are widely published, multiple barriers continue to prevent sustained and organised engagement in the Australian health research landscape. Best practice standards, organisational commitments and resources are needed to improve the status quo in Australia and provide research end-users with research outcomes that better align with their priorities and needs. As barriers are addressed and enablers actioned, the likelihood for the realisation of an evidence-based patient and family centred care will be enhanced.

The authors declare that they have no competing interests.