Why your input matters for spinal cord injury research

1 April, 2021

While research is hugely important for those of us who have a spinal cord injury, the reverse is also true, writes Antonio Vecchio.

Towards the end of last year, I was given the opportunity to join the Spinal Research Institute as the Consumer Engagement Lead.

This position appealed to me because of the opportunity to help create a program where people with lived experience of spinal cord injuries, their families, and the broader spinal community, can get involved in the research process.

To me, ensuring that members of the spinal community have a voice in research is vital. It ensures that what we want as a spinal community is reflected in the research being conducted.

In the end, it is we who will feel the impact of positive research, so we must be involved in the process.

A question for me

However, once I started the role, it prompted a little self-reflection of my own. I found myself asking why I hadn’t personally been involved in spinal research before.

Researchers must be kept up-to-date and educated on what we as consumers need to enhance our quality of life.

Like many of us, I have been reasonably active within the spinal cord injury community. The topic of research has come up in many discussions for many years, yet none of those conversations turned into my own involvement in research.

This notion caused even more self-reflection; I found myself asking why I wasn’t taking action out of these conversations.

The conclusion that I came to, is that although I have had many conversations about research, my overall spinal research knowledge was quite limited.

Creating awareness

This notion was reinforced as I immersed myself in my new role, at times asking myself “Why was I not aware of this?” when reviewing material.

I started to have conversations with people in the spinal community and established that I was not alone in my lack of research involvement. These conversations reinforced my conviction in the Consumer Engagement Program that I’m working to establish.

So how will I take this self-reflection and use it in the development of the program? The critical step will be creating awareness of the research process itself, which aims to break down the barrier between researchers and consumers.

As in anything, the more familiar we are as consumers with what is involved in research, the more likely we are to become more active in that area. I believe that education is the key to encouraging collaboration.

This mindset includes educating not only consumers but also the research community on the benefits of collaboration.

Turning talk into action

As consumers, we should be driving the outcomes of the research.

Researchers must be kept up-to-date and educated on what we as consumers need to enhance our quality of life.

We must take the conversations that we are having amongst ourselves to the people who have the potential to turn those conversations into action.

Our program will be based on the following ideas.

Inform and connect

First, as discussed above, will be to inform and educate consumers about spinal cord injury research.

This stage forms the foundation for consumers to develop their skill-set to be able to bring and communicate their lived experience to research conversations.

The program then aims to connect researchers with consumers, so that relationships are formed between the two groups.

Once relationships are formed between consumers and researchers, we hope for greater collaboration and ultimately, greater research impact.

The earlier that consumers are involved in the research process, the more likely the outcome of the research will benefit us consumers and our needs.

Collaboration, ideally, will be achieved at all stages of the research cycle. The earlier that consumers are involved in the research process, the more likely the outcome of the research will benefit us consumers and our needs.

Getting involved 

It is also important to remember that as consumers, we need to be providing feedback on the research that is occurring.

Getting involved in clinical trials provides a mechanism for consumers to provide such feedback directly to  researchers.

During the clinical trial stage, the data is collected and analysed, and conclusions drawn on whether the research outcomes will have real benefits to the spinal cord community, and therefore to the wider community in which we live.

New opportunities

This year the Spinal Research Institute celebrates its 10th anniversary.

Anniversaries are often a celebration of what has been achieved.

Over the past 10 years, the SRI has developed programs and initiatives that promote international collaboration and positive outcomes in spinal research.

Anniversaries also provide a chance to look forward to the future and new opportunities.

From a personal perspective, I feel excited about the future and the opportunities it brings. It’s time to turn those casual conversations that we are all having into action.

Antonio Vecchio is Consumer Engagement Lead at the Spinal Research Institute, and a Peer Mentor with AQA Spire. He has been living with a complete C5 spinal cord injury since 2005.

Tags: Blog, Health & Wellbeing