Introducing the External Ombudsperson Role in Patient-Oriented Research
Bridging the Gap: Ensuring Justice and Equality in Our Patient-Oriented Research
In any patient-oriented research -there will be issues of power and hierarchy - the reason we draw this attention, unlike other participatory research, is that the structure that it is embedded in, by virtue of being signalled, is a “patient,” and healthcare systems are hierarchical. I write more about this in my article, Missing Persons Alert: Finding the Lost “Person” in Patient-Oriented Research. This is different than something like a community-led and organized research study where everything from the origin of a thought, to the funding to the structure and decisions is all owned by the group itself. Now, this is even more important when working with children, youth and young adults; the imperative to create an environment that is not only safe but also empowering (power with, not giving power, or power over) cannot be overstated. These individuals bring invaluable perspectives to the research table. Yet, their contributions can be overshadowed by traditional power dynamics inherent in research settings. As a researcher dedicated to the principles of justice, equality, and trauma-informed approaches, I have been deeply reflective about how we can better support these brave young co-researchers.
The Critical Need for an External Ombudsperson
Recognizing the unique environment and the often unbalanced power dynamics in research, it became clear that a transformative approach was needed. The introduction of an external ombudsperson role in our patient-oriented research framework is a step towards redressing this imbalance. This role is not just about oversight, accountability, ethics and safety; it's about reimagining how young adults with mental illness can engage in research as true partners, with their well-being as the foremost priority.
Defining the Ombudsperson's Role
The ombudsperson, external and neutral, stands as a guardian of our core values - justice, equality, and respect. Their primary responsibility is to ensure that our young co-researchers have a confidential and safe channel to voice concerns, particularly about issues of safety and power dynamics. This role is pivotal in ensuring that our research space is not only trauma-informed but also actively responsive to the needs and voices of those it aims to serve. You people are able to access this role at any time, anonymously or otherwise, and the Ombudsperson will ensure a bidirectional approach of providing feedback to the institutional researchers and ensuring that issues have been dealt with in a timely and compassionate manner. We know situations are going to arise, and we want to ensure that we are growing through and with them, not being afraid of them.
A Framework Rooted in Restorative Justice
Our conflict resolution framework is the backbone of this initiative. Guided by principles of collective care, transparency, and active listening, we are committed to a process that is restorative, not punitive. This approach underscores the value of each voice, especially those that have been historically minoritized or unheard. In this light, the ombudsperson plays a critical role in mediating conflicts, ensuring that all perspectives are heard, respected and valued.
The HEARTS Ombudsperson: A Tailored Solution
Specifically designed for our study, the HEARTS Ombudsperson role is a testament to our commitment to creating a research environment that is genuinely safe and egalitarian. Anonymous reporting mechanisms ensure that our young co-researchers can express concerns without fear of judgment or reprisal. This role is a cornerstone in our trauma-informed approach to power hierarchies, ensuring that even the slightest imbalance is addressed with sensitivity and a willingness to adapt.
Healing, Reintegration, and Collective Care
Post-conflict, our focus shifts to healing and reintegration, ensuring that those involved can continue their invaluable contribution to the research. The ombudsperson facilitates this process, embodying our commitment to collective care. This role is not just about resolving conflicts; it's about nurturing a community where each individual feels seen, heard, and valued.
A Step Towards Ethical Research
The introduction of the external ombudsperson role is more than an administrative addition; it is a bold statement about the kind of research environment we aspire to create. One where young adults with mental illness are not just participants but respected partners, where their well-being is paramount, and where their voices shape the research narrative. This role is a testament to our unwavering commitment to justice, equality, and creating truly safe, egalitarian spaces in mental health research.
Your Voice Matters
I invite you, the reader, to engage with us in this journey. Share your thoughts, experiences, and insights. Let us collaborate and learn from each other to make patient-oriented research a beacon of hope and empowerment for young adults with mental illness. Together, we can redefine the landscape of mental health research, anchored in the principles of mutual respect and solidarity.
