Dr Michelle O'Driscoll; The importance of lived experience

HAVE you ever heard the phrase “there’s nothing like hearing it from the horse’s mouth?” This is something that we’re becoming more and more aware of now in healthcare and research - the power of lived experience in our understanding of and management of our conditions, as well as processing and acceptance of a diagnosis.

There are so many life events that you cannot really articulate unless you’ve been through them. And for somebody navigating uncertain or challenging terrain with their health or personal situation, there’s very little as reassuring, comforting and affirming as hearing directly from somebody that has been there, walked that path, and experienced something at least similar to what you’re experiencing right now.

In research, funding bodies are now actively encouraging and seeking the inclusion of Patient Participant Involvement in any study plan. If you’re designing a research project, they want to know exactly how you’re going to include the input of the people whom the research is related to. This input needs to be incorporated into the study design, delivery, analysis and communication of the findings.

For example, research about the impact of postpartum depression on mothers’ long-term wellbeing would ideally include the experiences and guidance of women who have been in that position themselves in its design. It makes sense - this will only strengthen the focus of the research, to really accurately pinpoint what these women experience and need as a result.

Patients of particular health conditions, or carers of family members with health challenges can learn a huge amount from others who have travelled that particular path, or indeed are still travelling it.

Similarly, healthcare professionals can learn a lot about the people they look after by including patient experiences in their learning and professional development. 

There are many ways to seek out that information or connection, if you feel it would be helpful for you on the health or life journey you’re on.

Online information resources - many of the best patient information websites or booklets include contributions from patient advocates. These may be in the form of short videos where the patient speaks to their experience, or quotes in booklets or leaflets, where their experience is captured on the page in front of us. Being able to access these at times when we’re feeling vulnerable or unsure can give hope and comfort in those toughest moments.

Family and friends - for some difficult situations, you may personally know others who have gone through similar. Or you might know somebody who knows somebody! While it’s important to realise that no two journeys are exactly the same, linking in with somebody who you can ask specific questions of, or who simply understands what you’re going through can be very helpful.

Online discussion boards - There’s a multitude of social media groups, online discussion boards and other platforms where threads related to particular health conditions can be used to comment and discuss experiences.

While these can serve a purpose in terms of information gathering, they should be used with caution. Often, they attract those who are still very much struggling, rather than those with the full range of the experience behind them, and can also be filled with misinformation as they’re largely unmoderated.

There’s probably more reliable ways to access the experiences of others that doesn’t fuel so much anxiety and uncertainty, but use your own discernment based on the platform in question as some of them can indeed be helpful.

Support groups - for some, talking extensively with family or friends feels too close to home, and many prefer a more external in-person outlet. 

Whether it’s cancer, asthma, diabetes or arthritis, there’s regional support groups available to join.

Having that space to share your experience and to hear others’ stories is a great way to feel less alone and more understood. The same goes for the breadth of human experiences like bereavement, motherhood or addiction - there’s power in numbers, and in hearing the reassurance of others, in a supportive safe space.

Our doctors, nurses and pharmacists strive to provide us with appropriate healthcare information, understanding and empathy. But even more powerful is that element of lived experience, the reassuring words and true acknowledgment of somebody in the same boat - because their experience is our experience, and even in our loneliest moments, it reminds us that we’re in good company, and good hands.