Meaningful consumer-led or co-produced research. Are we there yet?

The phrase ‘Nothing about us, without us’ has long been proclaimed in the disability movement, and is highly applicable in mental health research.

In the article below, Dr Katherine H Gill, Chair of the Consumer-Led Research Network, outlines gaps in understanding and practice around consumer involvement in mental health research.

Offering 12 tips for improving that practice, she sounds a big warning: that while the input of consumers in a well-designed and  supported co-produced or consumer-led project can be transformative, it can be disempowering and potentially harmful for the consumer when it is not.

Her article was originally published in the Summer 2018 edition of newparadigm, published by the Psychiatric Disability Services of Victoria (VICSERV). It is republished here with permission and thanks.

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Dr Katherine H Gill writes

In Australia and internationally there is increasing recognition  of the importance of active consumer involvement in research. In 2002, the National Health & Medical Research Council (NHMRC) and the Consumers’ Health Forum of Australia (CHF) released a Statement on Consumer and Community Participation in Health and Medical Research which acknowledges the benefit of and rights of consumers to participate in health research.

This statement was updated  in 2016 and highlighted why consumer and community involvement  in research was so important. The statement recognised that consumers offer unique and valuable insights as research is framed, conducted and translated  and that consumers help to ensure research quality and relevance. It indicated that consumer involvement in research leads to increased public confidence in the relevance of the research, improved openness and transparency in the conduct of the research, and improved accountability for the use of public money, with communities being better informed and having a greater understanding of the research.

The NHMRC recognises that involving consumers adds value to health and medical research, and that consumers have a right as well as a responsibility to do so. The Australian Code for the Responsible Conduct of Research states that ‘appropriate consumer involvement in research should be encouraged and facilitated by research institutions and researchers.

Consumer expertise in research projects may add a different perspective to the research frame, making the research more relevant to the people who benefit from the end product. Consumers may facilitate dissemination and translation of the research through their peer networks, adding to the impact and value of the research.

Facilitating the consumer voice throughout the research provides consumers with a sense of ownership and helps  to break down the barriers and divide of ‘us’ and ‘them’, whereby consumers are seen as the ‘done to’ not the 'done with’. Working with consumers on a research project has the potential to break down stigma and discrimination, with consumers recognised and valued for the expertise the lived experience brings to the research table.

The NHMRC/CHF statement provides the key to developing  stronger partnerships between researchers and consumers  at all levels of health and medical research in Australia.

Researchers are encouraged to foster partnerships with consumers and to actively involve consumers in their proposed research when they apply to NHMRC for research funding.It provides information for research institutions to involve consumers in a meaningful and ethical manner. This includes:

• the development of policies that stipulate consumer involvement and partnership in all stages of research

• ensuring the consumer’s time and expertise is valued and appropriately remunerated and acknowledged

• building capacity of researchers to involve consumers by providing training and recognising consumer involvement as good practice

• building the capacity of consumers through training, mentoring and support

• minimising barriers to meaningful consumer involvement.

The statement highlights that researchers should have planned and budgeted strategies to support, implement and acknowledge appropriate consumer involvement throughout the research process.

The Australian National Framework for Recovery Orientated Practice Domain Four identifies recovery orientated organisations as having an organisational commitment to acknowledging, valuing, respecting, drawing on, and learning from the lived experience. This includes [Domain 4B] providing opportunities for research and evaluation conducted by peers and people in recovery, and incorporating these findings into quality improvement initiatives and ongoing organisational change.

While policies, frameworks and guidelines dictate the involvement of consumers in research, what this looks like in practice can be vastly different across different services and organisations, with researchers having varying ideas and expectations of consumers and consumer capabilities in research.

No or only tokenistic consumer involvement

Consumer involvement in research can be represented on a continuum, with four distinct levels of consumer involvement [Figure 1].

Level 0 represents no consumer involvement, with the research being done ‘to’, ‘for’ or ‘about’ consumers.

Level 1 is tokenistic consumer representation. This may include speaking to or consulting with consumers about the research. The consumer feedback may or may not be taken on board, and in this consultative process the balance of power lies with the researcher, with the consumer input having little or no real impact on the output of the research.

In such research, consumers may be invited on or recruited as a committee member in a research project but have no real say in the research project, design or research question/s.

The researchers may have no expectations of the consumer to contribute as an active team member, and should the consumer/s challenge the status quo or the prevailing dominant view, the consumer input may be invalidated and/or seen as less relevant than the input of the other researchers.

At Level 1 the consumer researcher is not expected to bring any more than their lived experience. The consumer is not expected to have any real research skills or experience and may not be remunerated for the time they contribute to the research, or remuneration may be at a basic rate with the assumption that the consumer researcher has no real research skills or experience.

Between Level 1 and 2 of consumer involvement in research, a consumer may be supported to be involved in the research, but still have no real say in the research design or questions.

For example a consumer may be recruited to do a specific task, such as interview other consumers or support consumers to fill in questionnaires. This type of consumer involvement may see the lead researcher dictate what a consumer researcher does and says as part of the research. At this level of consumer involvement it may be assumed that consumer researchers do not have the skills or capability to contribute to the research design, research questions and data analysis.

The participation of consumer researchers at Level 1 is often enacted simply to ‘tick the box’ of consumer involvement. There may be potentially immutable power differences between the consumer researcher and the rest of the team, which gives the consumer researcher no real say, so that the involvement of consumer researchers can only be regarded as tokenistic. While the consumer voice may not be heard with this type of research partnership, this does provide an opportunity for junior consumer researchers to build skills and experience within research projects, as a pathway to consumer-led or co-produced research projects.

With the lifetime prevalence of mental illness and mental distress in society identified as almost one in two (ABS 2008) it is highly likely that a large percentage of people involved in research may have been touched by mental illness or mental distress at some point in their lifetime. With the prevalent stigma and discrimination that exists in society and particularly in the workplace setting about mental illness, people with lived experience are less likely to disclose experiences of mental ill health for fear of recrimination and having a negative impact on their career and how they are seen in the workplace.

When a person becomes skilled at hiding their lived experience of mental illness and/or mental distress they are unlikely to be skilled in using their lived experience purposely to inform service design, delivery, research and evaluation. Consumer researchers are not just researchers with a lived experience of mental illness/mental distress, but researchers who are skilled at harnessing their lived experience purposefully, alongside their professional training, experience and qualifications, to contribute to the research, at all stages throughout the research processes.

When opportunities present that respect consumer researchers as valued members of a research team, including remunerating them at a rate equivalent to their skills, experience and qualifications, there is no shortage of qualified consumer researchers. However consumer researchers find there is a shortage of opportunities that enable them to be supported, included and respected as active members of research teams and to use their lived experience in a meaningful and authentic way that adds value to the research project.

Working in partnership

Co-production, Level 2 on the continuum, involves consumer researchers working in partnership with other researchers in a collaborative, equal and reciprocal manner. In co-production, consumers and other researchers share power and contribute equally, recognising that all parties bring valued experience and valued perspectives. Co-production is more than consumer involvement, consumer engagement and/or consumer consultation. Co-production is about active engagement of consumer researchers that recognises they bring vital expertise and knowledge based on their lived experience, combined with their professional background, training and experience. As such, a consumer researcher would be remunerated appropriately based on their skills, experience and qualifications.

At its most effective, co-production has been recognised as having the potential to be transformative (Needham 2009). Co-production requires a redefining of the relationships between consumers and the traditional ‘expert’.

Co-production may require a shift in organisational structure and culture (Gill 2014). Co-production requires staff and other researchers to respect and accept the expertise of the lived experience, to be able to share power and decision making, and to recognise that consumers have an additional asset of lived experience that can be harnessed in the design and implementation of research and evaluation.

Co-produced research requires the active involvement of the consumer researcher at all stages of the research. Working in partnership in a collaborative manner enables researchers to better understand consumer experiences. This lends itself to far stronger research with co-produced research projects having the potential to lead to innovative outcomes.

Working in equal partnership helps to break down barriers, stigma, and pre-conceived ideas about the potential of consumer researchers and the expertise consumer researchers can bring to the project, but co-production is not without challenges. In an ideal co-produced project, the consumer would be supported and empowered in the research process to contribute in an equal and reciprocal manner with others on the research team.

However, frequently the consumer researcher may be a sole consumer voice on the research team and may feel disempowered and that their voice and opinion is not as equally valued as other team members. At times society’s prevalent stigma and discrimination may lead to a process that becomes unsafe and potentially damaging to the consumer researcher.

Consumers experience many barriers to meaningful engagement in co-produced research projects. These may include:

• feeling powerless

• discriminatory attitudes of others

• use of disempowering language

• feeling isolated/siloed and/or treated differently to others

• without a lived experience, including having reduced access to resources.

Organisations with strong hierarchical structures and top-down processes may contribute to feelings of disempowerment; there may be poor human resource processes with a lack of flexibility and a lack of understanding of illness and the legal requirement for the use of reasonable accommodations in the workplace setting.

In order for research to be meaningful, authentic, safe and useful to consumers, some consumer researchers are opting for a consumer-led process [Level 3] whereby the balance of power and decision making process is shifted and lies with the consumer researcher. In consumer-led research the research is planned, directed and executed by consumers. Professionals may be involved in guiding, supporting and assisting the research process but in consumer-led research the balance of power lies with the consumer researcher.

Recommendations to facilitate authentic and safe consumer involvement in research:

1. Facilitate consumer ownership and leadership, involving  and championing active consumer involvement from the start to finish.
2. Foster an attitude of innovation and curiosity, be open to learning from the lived experience expertise, and be willing to be challenged.
3. Create a culture of openness and honesty, with clear and transparent communication, and recognise that all opinions, perspectives and ideas have equal weight and are all respectfully considered.
4. Work in equal partnership, with equal and reciprocal collaborative relationships, and a commitment to sharing power and decision-making.
5. Create a culture that values and respects the consumer experiential knowledge base.
6. Facilitate adaptive, responsive and flexible leadership.
7. Have equality in numbers of consumer representation, to facilitate peer support and strengthen the consumer authentic voice.
8. Be willing to change and address negative organisational  culture, misperceptions, negative assumptions, stigma and discrimination and be open to challenge the predominant mainstream and medical model belief system.
9. Facilitate safety and break down barriers to inclusion; consider resourcing flexible and accommodating work places, supervision, peer support and the impact of negative, stigmatising language.
10. Provide supportive, inclusive environments that foster teamwork, support empowerment of the consumer voice, and offer sensitivity and respect for the consumer voice with no divide of ‘us’ and ‘them’.
11. Acknowledge and recognise the input and contribution of the lived experience expertise.
12. Recognise that co-production and consumer leadership can be challenging for the system, that it requires a redefining of the way ‘experts’ view consumers, a change in the language and nature of interactions, and a shift in organisational structure and culture

Australian policies, frameworks and funding bodies mandate the active involvement of consumers in research, and consumer  involvement in research is recognised as an ethical imperative. However the lack of clear frameworks, guidelines and funding structures leads to a haphazard and ad hoc  process of consumer involvement.

While the input of consumers in a well-designed and supported co-produced or consumer-led project can lead  to transformative outcomes, the lack of clear structures and processes to facilitate consumer involvement and to recognise consumer expertise can lead to a process that becomes disempowering and potentially harmful for the consumer.

The recommendations above can help to facilitate the safe inclusion of the authentic consumer voice in research projects so that consumer researchers add value to the research and improve outcomes for the community affected by the research.

References

Australian Bureau of Statistics 2008, National Survey of Mental Health and Wellbeing, Canberra, available at http://www.abs.gov.au/ausstats/abs@.nsf/mf/4326.0.

Australian Health Ministers Advisory Council 2013, A national framework for recovery orientated mental health services, Commonwealth of Australia, available at http://www.health.gov.au/internet/main/publishing.nsf/content/67D17065514CF8E8CA257C1D00017

Gill, KH 2014, ‘Recovery colleges: co-production in action: The value of the lived experience in learning and growth for mental health’, Health Issues, 113, 10-14.

Needham, C 2009, Co-production: An emerging evidence base for adult social care transformation, SCIE Research briefing, Social Care Institute for Excellence, United Kingdom.