“Embrace the opportunity to learn while contributing your unique expertise”: Public contributor Nadya on working with us

Nadya is a public contributor on our project about co-designing weight management programmes. Here she blogs about her experiences with us.

I’m deeply passionate about co-design. I believe it’s one of the most effective ways to incorporate patients’ voices in developing weight management programmes. I’m equally enthusiastic about bringing patients’ perspectives into research.

In any involvement work I do, I ask myself: “Has my involvement made a difference or impact to myself as a person living with overweight and obesity and to society at large?”

Finding my voice as a public contributor

In ARC West’s project, I contributed my experience as a person living with obesity. What stood out most was how my opinions and suggestions were genuinely valued. Despite my initial reservations – mainly because I’m neither an academic nor a healthcare professional – I truly felt an equal partner in the team.

This validation was both refreshing and empowering. Over the years, through participation in focus groups, interviews and obesity conferences, I’ve seen how patient and public involvement and engagement (PPIE) can sometimes feel like a tick-box exercise. But my experience with ARC West was entirely different. They fully understood the importance of meaningful PPIE.

What made this experience different

Working with ARC West was a unique and positive experience. They implemented several practices that made me feel included and valued:

• Financial recognition: My time and expertise were appropriately remunerated, acknowledging the value of my contribution
• Opportunities to brainstorm: I was given ample chances to discuss, brainstorm and share ideas with the team
• Understanding the complexities of obesity: ARC West recognised obesity as a chronic condition with multiple co-morbidities, approaching the subject with compassion and depth
• Flexible meeting arrangements: Meetings were scheduled at times and dates that accommodated my needs. This might seem like a small detail but I have a full-time job. Adapting to my times made a huge impact on my ability to participate fully

Breaking down stigma through collaboration

Because of this thoughtful and inclusive approach, I felt less stigmatised as a person living with obesity. I have experienced stigma throughout my life and am always apprehensive when talking about obesity with others. Working with Beki and the ARC West team boosted my confidence, enabling me to feel safe and empowered when presenting to different audiences.

The importance of patient voices

This experience highlights the potential of co-design and PPIE to truly transform not just research outcomes, but also the confidence and wellbeing of those involved.

I have spoken to many people living with overweight and obesity. They’re reluctant to share their experiences, because of the stigma prevalent throughout the world we live in.

Hopefully this type of PPIE and including patients’ voices will improve the research process. But most importantly, it’s about recognising the value of lived experience and creating a culture of mutual respect.

As someone who has felt the transformative power of such collaboration, I hope to see more projects and teams embrace the authentic inclusion of patients’ perspectives. Together, we can design programmes and research initiatives that make a real difference in people’s lives.

My top tips when considering becoming a public contributor

1. Understand your value
   Your lived experience is incredibly valuable to researchers. You bring perspectives, insights, and ideas that researchers and health care professionals may not have considered. Never, ever underestimate the importance of your contribution!

2. Ask questions
   When joining a project, don’t hesitate to ask questions about the research goals, your role and the expectations. You are an equal part of this research! I always feel more confident and informed when I know exactly what is expected of me, and what I can expect from them.

3. Look for supportive teams
   When considering joining a project, make a judgement call from initial communications. Does the team show they value and respect public contributors? Do they provide training, opportunities for input and flexible arrangements?

4. Be honest about your needs
   Whether it’s scheduling flexibility, financial remuneration or specific accommodations, let the team know what you need to participate fully and comfortably. This is vital – never be embarrassed or think it rude or too direct to voice your needs. This should happen in any other working environment – so why not here?

5. Take advantage of training
   Some organisations offer training for public contributors, covering topics like research basics or how to effectively share your perspective. This can be a great way to build confidence and skills. It can also benefit you in many other ways in your daily life.

6. Prepare to learn
   Engaging in research may introduce you to new terms, processes and methodologies. Embrace this as an opportunity to learn while contributing your unique expertise. I’ve learnt so much from my experiences and made excellent relationships. Equally importantly, it’s been so rewarding.

7. Expect mutual respect
   You should always feel and be treated as an equal partner in the research process. A good team will value your input, listen to your feedback and make adjustments based on your suggestions.

8. Be patient
   The research process can take time, and results may not be immediate. Trust that your contribution is making an impact, even if the outcomes take a while to materialise. Always ask to know the outcome of the project.

9. Celebrate your achievements and be proud of yourself
   Whether it’s helping shape a project, presenting your views, or contributing to a publication, take pride in what you’ve accomplished as a public contributor.

My final thought

Getting involved in research as a public contributor is not just about helping the researchers. It’s about being part of something that can make a real difference…

Your voice matters – so go for it!