Lived vs Learned Experience – The Role of Patients in Research         

I recent wrote an article for Rare Revolution magazine – “Engaging Patients To Shape The Research Of The Future”, explicitly talking about how  the shape of research is changing, with more and more focus now turning to consultation of patient organisations in developing clinical research. 

There is now an expectation when applying for grants, and even developing trials that patient feedback is actively sought out, and even conditional for approvals and funding.

In the article I talk about the reasons why connecting with patient organisations is so important, and the benefits for both. 

However, now I’m sitting here in the Twins Congress in Budapest, and after several conversations today I’ve realised that there are even more reasons why research needs to evolve, and create opportunities for collaboration between patients and researchers.

It comes down to something meaningful. Lived vs Learned Experience

While researchers go into their work with the best intentions, few have actual personal experience in their research areas. Whatever their reason for starting their research, all their experience comes from what they have learned from data, books, and other research. They have vast experience, but very little comes from a personal connection to the topic.

This isn’t a bad thing; let’s be straightforward here. Learned experience is vital as it builds on what is already known, and creates new opportunities to build on this knowledge by developing new research opportunites. It answers existing questions, and shapes new questions. Learned experience is important and should always be a part of every research topic.

But something that is lacking is a personal connection to the topic. While passion for a topic is a driving force, there is sometimes a lack of a deeper connection to subjects, and why this particular topic may be so important and relevant for the wider community.

And that’s where we start to talk about the benefits of lived vs learned experience.

Patients are such a valuable resource when it comes to sharing information. They have something beyond what the textbooks and journals say – they have personal, connected stories to the topics. 

There is a wealth of experience that can sometimes remain untapped. Lived experience can give access to existing research – what patients have experienced in the wider community. It can bring clarity to research topics – are we pursuing topics of relevance to patients? Is our research hitting the mark of helping our target group?

And potentially the biggest revelation – what does that lived experience show us about the next topics that need to be researched. What do patients want to know about their diagnosis, and how can we bring them the answers? Anecdotes that provide important insights into the lives of the people who are invested in these outcomes can be such a benefit.

Let’s get this clear – neither of these types of experience are better than the other. Both have benefits and deficits – Learned experience has the support of proven (or disproven) research, but is limited by the lack of personal experience. Lived experience has the benefits of expanding thinking and creating new research, but is limited because much of it revolves around anecdotes and having the access to these important patient voices.

This is why it is so important for researchers to connect with patient groups and work alongside them and create valuable partnerships.

These collaborations can really change the future of research. The questions that patients ask can lead to new research topics, but in turn, these questions can be answered. It creates a mutual respect, and creates a better understanding of the diagnosis within the network, but also in the wider community as patients can really communicate these findings with confidence.

What it also does is breaks down the barriers between patients and researchers, and create a wonderful shared experience that combines both the lived, and the learned.

One of the things that I’m super proud of is the opportunity that I have to be able to live this example. 

My foundation works closely with a research team based at the LUMC here in the Netherlands, and together we actively share our lived and learned experiences. For the patients, we have access to the latest research and information about our diagnosis, and for the researchers, they can see the patient perspective, and also gain insight into the questions patients ask.

In 2022, we jointly submitted an abstract to the European Conference on Rare Diseases (ECRD) and talked about our partnership and how we work together. We created a documentary about how we work together, and to our delight, we were selected as a top submission and invited to publish our abstract.

While we know that this partnership isn’t foolproof and we’re still learning as we go, what we do know is that this is a strength that we have – working together creates equal partnerships and valuable insights.

There’s a benefit to combining this experience together. Lived vs learned experience should really be changed to lived and learned experience to change the future of research together.