Digital Applications in Mental Health.
16 May 2024
Webinar highlights: How do we get co-creation right in mental health research?
Co-creation in mental health research
A usual dilemma in mental health innovation research is that co-creation approaches, experiential knowledge, and the scientific methodology do not always perfectly fit together. So how do projects ensure that the design and implementation of their co-creation processes benefit their co-creators as much as it benefit them?
Co-creation is a collaborative approach involving all actors in mental health working together on an equal basis to develop and implement policies, services, programmes and communication that foster positive mental health according to a psychosocial model and human rights-based approach.
Together with co-creation leads and experts of seven big Horizon Europe projects, the webinar "How to get co-creation right in mental health research" held on 15 May 2024 tackled some of the most important questions commonly encountered by both the scientific teams and the co-creators.
The following presents the highlights of the panel discussion and inputs from the participants:
Along the co-creation pathway, how can we actively prevent tokenism and ensure that individuals with lived experiences of mental health problems are not merely seen as a diversity checkbox, but as equal collaborators in developing solutions?
- Designing co-creation from the very beginning of the project is crucial for the integration and continuous involvement of stakeholders throughout the project. Co-creation should be transformative, not just informative, ensuring that insights are genuinely products of collaborative work.
- Co-creation is a relational process aimed at co-constructing knowledge and innovation. This requires stakeholders to have a common understanding and access to necessary resources. Addressing challenges such as incompatible agendas, language barriers, and conflicts of interest is essential. So as continuous monitoring, self-reflection, and the creation of safe spaces to foster an environment where participants feel free to express doubts and concerns.
- Adhering to principles of equity and solidarity in decision-making, along with flexibility in meeting formats and language, will help ensure that all participants are accommodated. It is important to support all stakeholders, without assuming that those with lived experiences are less equipped.
- Building a cohesive team of citizens and researchers is another challenge so mutual understanding and gradual team building should be addressed. There should be direct contact and transparency about the use of citizen inputs between researchers and citizens to build trust and enhance project quality. Workshops, regular meetings, ogoing feedback and self-evaluation of citizen involvement at different stages will allow for input, prioritisation, and continuous improvement.
- Humility is essential for researchers, recognising that they are not experts in everything.
- Knowledge transfer empowers co-creators to make informed decisions. Consider capacity building for people with lived experiences and establishing a safe, transparent research process.
- Empowerment and shared leadership roles for individuals with lived experiences can help ensure genuine value in the co-creation process. Involve experienced organizations to bridge gaps and enhance learning. Avoid assumptions and understand diverse perspectives, along with addressing cultural challenges, active listening, and emotional intelligence training.
- Develop broad recruitment strategies to help understand various issues affecting participants. Inclusive recruitment language and avoiding exclusive terms will help in mapping and engaging stakeholders throughout the project stages.
- Allocate sufficient time for the co-creation process, regular meetings for feedback, and integrating co-creation into all project stages.
Are there inherent tensions between the rigor of scientific methodology and the adaptability required for true co-creation? How can researchers reconcile these tensions?
- It is important to acknowledge the inherent tension between the objective nature of scientific methods and the socially constructed aspect of data -- this is the first step to reconciling this tension.
- Flexibility in co-creation procedures is crucial. While scientific rigor is important, it is necessary not to be excessively rigid to gather comprehensive feedback and maximize interaction with users and stakeholders. Offering flexible opportunities for continuous feedback, accommodating different needs, and creating a sense of community incentivises participation and ensures that the process is meaningful to all involved.
- An interdisciplinary approach can address the challenges of engaging participants in long and potentially boring assessments.
- A mixed-methods approach, combining both quantitative and qualitative work, is important.
- Communication is key. Explaining the scientific process in an understandable way for different audiences ensures that everyone feels included and valued. Regular communication, both verbal and written, also helps ensure that everyone is informed and involved. Make sure to build extra time for communication into the framework and respect the needs and situations of all participants.
- Create a community of practice for collaboration and skill-building.
- Engaging with legislation and obtaining informed consent from parents can create tensions, but it is important to navigate these challenges through transparent and continuous dialogue.
Is co-creation worth it? How do we measure the success of co-creation efforts in mental health research beyond traditional metrics such as publications and grant funding? What alternative indicators of impact should we explore?
- Measuring the success of co-creation efforts in mental health research involves considering multiple dimensions beyond traditional metrics such as publications and grant funding.
- Co-creation inherently improves overall project quality and is essential for effectively addressing the needs of stakeholders. However, this process necessitates buy-in from all stakeholders, thus a strategy to do so, to achieve your desired impact. The measurement of co-creation is intertwined with the measurement of impact.
- The output of the co-creation process, including the end product, its impact, uptake, and benefits, should be measured. This could include impact on policy and practice, empowerment and capacity building, and the ethical and social implications of co-creation efforts.
- The experience of participating in the process can be assessed through interviews, focus groups, and other methods to understand how participants felt during the process. Assess satisfaction with engagement levels, involvement, and the quality of relationships and partnerships (trust, respect, collaboration).
- The long-term effects on participants, such as the confidence and skills they gained, are important indicators.
- Evaluate acceptability and acceptance from various stakeholders. To do this, communicate research findings and develop logs to track changes and impact of co-creation.
- Integrate the knowledge and experience gained from co-creation into the scientific community by creating publications to document impacts, difficulties, limitations, best practices, and outcomes. This can build a rigorous scientific body around co-creation as a valid methodology.
- Societal advisory groups can lead co-creation efforts, focusing on understanding users' needs, usability, and sustainability. Success indicators should include measures of empowerment, cooperation, and relationship building. Sustained involvement of co-creators throughout the project is a key sign of impact.
- Additional indicators of success can include articles in mainstream media and their reach - it could be an indicator of acceptance of interventions and understanding of the topic among the public.
- Success can be seen when the target audience feels heard and hopeful, influencing policies and changes. Focus on the impact on the co-creation group itself, rather than just large-scale impact, as it is equally important.
The engagement of different stakeholders in co-creation needs to be sustained and nurtured, but this can be challenging because research projects are often quite long. What challenges have you faced in supporting this sustained engagement, and what strategies have you put in place to support the engagement of all stakeholders?
- Ensuring sustained engagement in co-creation within mental health research involves addressing equitable compensation, recognition, team dynamics, and the specific challenges of diverse and multi-national projects.
- Equitable compensation could include financial incentives and other forms of support such as funds for upskilling, CV support, and references.
- It can help you to create a community of practice with a core group co-creators of the same language (e.g. English) and local groups for vulnerable populations.
- There could be challenges related to regulatory obligations and timing when inviting associations of end-user groups. Solutions could include: identifying specific knowledge needs and specifying investments for continuous participation. It is not necessary for all individuals to be engaged throughout the entire project; instead, contributions can be made at specific time points. Acknowledging participation without requiring long-term commitments, such as through certificates of participation or training for professional development, could also be an option to ensure recognition. Additionally, asking participants how they would like their contributions acknowledged further personalises and validates their involvement.
- As projects evolve, it is important not to overlook the needs of the team itself. Co-creation should start at the team level, identifying and addressing aspects within the team that are reflected in the work. This includes supporting team members who join and leave the wider team, and ensuring their needs are met. Implementing good practices from the start could demonstrate effective approaches to other co-creation members and maintain a cohesive and motivated team. Teams should consider these aspects as they move forward.
When talking about flexibility in co-creation, how do we strike a balance when findings deviate from the proposed project? How do we handle this with ethical review boards and funders?
- It is essential to engage more deeply with ethics committees, not just funding agencies. Projects should be amended with strong cases for why deviations or new methods are being used. However, the process for these amendments is often lengthy, requiring considerable time and sometimes exceeding project timelines. Therefore, there is a need to reconsider how co-creation is done, funded, and understood by both funding agencies and ethics committees to make these processes more efficient and supportive of innovative methods.
- Researchers should approach co-creation with an open mind, ready to genuinely learn from their co-creators. Co-creation should not be pursued merely for funding or out of obligation. It is crucial to acknowledge that co-creators bring valuable lived experiences with the circumstances being studied. By focusing on the insights and knowledge that can be gained from co-creators, researchers can enhance the quality and relevance of their work.
Attended by over 200 participants consisting of researchers, practitioners, people with lived experiences, association representatives, and policy-makers, the interactive session has gathered valuable inputs both from the panelists and the attendees that will influence and feed into new policies and future research work programmes of the European Health and Digital Executive Agency (HaDEA) - the funding agency of the seven EU projects.
The event was opened by Mirjam Borstnik Gergely, Deputy Head of Health Research Unit, HaDEA and was moderated by Liuska Sanna, Head of Operations, Mental Health Europe. The expert panelists include Dr. Cláudia de Freitas (ADVANCE); Dr. Mel McKendrick (SMILE); Dr. Arlinda Cerga Pashoja (Mentbest); Dr. Karthrin Schopf (Reconnected); Dr. Kate Woodcock (ASP-Belong); Dr. Célia Sales (BootStRaP); Dr. Rodrigo Antunes Lima (Improva).
Starting September 2024, "Mental Health Dialogues", a webinar series jointly organized by the seven projects, will tackle in-depth issues within mental health and will explore current innovations that are being developed to address it. Pre-register here.
Improve: Dr. Rodrigo Antunes Lima, Sant Joan de Déu
This webinar is an initiative of 7 big EU Horizon Europe projects under boosting mental health in Europe in times of change (HORIZON-HLTH-2022-STAYHLTH-01-01-two-stage), namely ADVANCE, ASP-belong, Boostrap, Improva, Mentbest, Reconnected, and SMILE. This is the first of a 4-year joint-webinar project with the aim to provide synergy among like-minded mental health research serving Europe and beyond.
Contact:
Joyce Anne Quinto
Project and Communications Manager
joyce.quinto@sund.ku.dk