The Fundamentals of Lived Experience

Practitioners in the healthcare sector are well-versed in medical knowledge, evidence-based practices and cutting-edge research. However, in recent years, there has been a growing recognition of the value of the lived experience of patients and their carers in providing more comprehensive and patient-focused care. In this blog, we share the fundamentals of lived experience and how it can help enhance your patients' experiences and outcomes.

What is lived experience?

Lived experience refers to the unique insights and perspectives gained through personal encounters with health conditions, treatments, or the healthcare system. It encompasses the first-hand knowledge and understanding individuals acquire by living with a specific health condition or being involved in the healthcare journey as a patient or caregiver. Lived experience doesn't just focus on a patient's clinical experiences but incorporates individuals' thoughts, emotions, challenges, coping mechanisms and overall journey as they navigate their health-related experiences.

Is lived experience the same as the 'patient voice'?

Incorporating the 'patient voice' into a healthcare organisation is a phrase that is becoming more common in Australia. But while there is an overlap between lived experience and the patient's voice, they are distinct concepts. Lived experience encompasses the entire patient's journey and personal insights from living with a health condition. In contrast, the patient voice refers to the active involvement and expression of patients' perspectives within the healthcare system. In essence, lived experience provides the foundation for the patient voice, shaping individuals' unique perspectives and informing their active participation and contributions to healthcare decision-making and advocacy.

Why is incorporating lived experience into your healthcare practice necessary?

Incorporating lived experience insights into healthcare practice holds immense value. Firstly, it helps bridge the gap between clinicians and patients. By acknowledging and valuing patients' experiences, healthcare providers foster a sense of trust, respect, and collaboration. This, in turn, leads to improved patient satisfaction, increased adherence to treatment plans and better health outcomes. Lived experience also provides healthcare professionals with real-world knowledge that complements medical expertise. It adds depth to clinical decision-making, helping practitioners better tailor treatments, anticipate challenges and enhance overall care delivery.

What sorts of insights can lived experience provide to improve patient care?

Lived experience provides healthcare providers with valuable insights that can enhance their understanding and improve the care they deliver. These can include a window into a patient's journey's emotional, psychological and social aspects that may not be evident from medical records or clinical assessments. 

Patients with lived experience can provide detailed descriptions of symptoms and share information about the progression of their condition over time, offering healthcare providers a deeper understanding of the effectiveness of treatment plans and their impact on daily life. Patients often develop coping mechanisms and self-management strategies to navigate their health conditions (like lifestyle modifications or alternative therapies), and by understanding these, healthcare providers can better support other patients in their self-care efforts and integrate effective techniques into treatment plans.

Lived experience can also shed light on the challenges patients face within the healthcare system, such as issues with access to care, communication gaps, coordination of services, affordability and cultural or linguistic barriers. This information is invaluable for healthcare providers to identify areas for improvement and deliver more personalised care.

Getting started with collecting lived experience insights in your practice.

Collecting lived experience insights for your practice involves actively engaging with patients and creating avenues for them to share their stories and perspectives. Here are some ways to get started with gathering lived experience insights from your patients:

1. Invite Open and Respectful Communication in Consultations: Foster open and respectful communication with your patients. Please encourage patients to share their experiences, concerns and preferences during consultations or check-ups. Actively listen to their narratives, validate their emotions and ask relevant questions to gain deeper insights.

2. Patient Surveys and Feedback: Implement patient surveys or feedback mechanisms to gather lived experience insights. Create surveys that capture various aspects of your patient's healthcare journey, including diagnosis, treatment, communication and overall satisfaction. Collecting feedback anonymously can encourage honest responses.

3. Patient Advisory Groups: Establish patient advisory groups within your practice setting. Invite patients with lived experience, caregivers and patient advocates to participate. These groups serve as platforms for patients to share their insights, provide feedback on services and collaborate in decision-making processes to improve care delivery.

4. Digital Platforms: Utilise digital platforms such as patient forums, social media groups or online communities to connect with individuals with lived experience. Engaging with these platforms allows you to learn from their stories, concerns, and perspectives. Monitor online discussions to gather insights and address any common issues or misconceptions.

5. One-on-One Interviews or Focus Groups: Conduct one-on-one interviews or organise focus groups with patients willing to share their experiences. These in-depth conversations provide rich qualitative data and allow patients to express themselves more fully. Make sure you respect privacy and confidentiality throughout the process. If you do not feel confident running these interviews or focus groups, you may consider hiring a professional facilitator to assist.

6. Engage a Professional Patient Advocate or Advocacy Organisation: If you have specific requirements or you are having trouble identifying patients in your practice who can provide lived experience insights for you, you might like to consider engaging a professional patient advocate or a patient advocacy organisation that specialises in the specific health condition/s you require insights for. These organisations can connect you with individuals willing to share their lived experiences.

Before you start engaging with patients, it is always important to take some time to plan what it is you want to achieve from your engagement and how you plan to use the insights to improve the experiences and services for your patients. It is also essential to be upfront with patients about your expectations of their engagement, respect the time and input they provide, and recompense them according to their effort and requirements.

Lived Experience Adoption in Australia.

In Australia, lived experience insights are gaining prominence in the health sector, with the mental health sector emerging as a frontrunner in utilising these invaluable perspectives. The involvement of individuals with lived experience as peer support workers, advisors and educators showcases a commitment to human-centred care, empowerment, and reduced stigma. This approach fosters a deeper understanding of mental health challenges and recovery pathways, leading to the delivery of more effective and empathetic mental health services.

The Royal Commission into Victoria's Mental Health System final report delivered in 2021 recommended that people with lived experience of mental illness or psychological distress have specific roles in the decision-making about policies and programs and the design and delivery of services that directly affect them. Organisations like Black Dog Institute and Sane Australia are two great examples of mental health organisations that have adopted this lived experience approach and offer guidance on engaging with individuals living with mental health conditions to enhance support services for those in this sector.

Further Learning:

Ready to learn more about engaging with your patients and discover how your practice can evolve to be more PX-driven? Take our introductory Fundamentals of PX course online now. 

For further details on why partnering with your patients to understand their lived experiences will become more critical to your practice shortly, watch our free Kickstarter webinar - Australian Health Reform: What it means for you and your practice here.

Further Reading:

Article: Advice for health organisations on engaging with consumers written by consumer advocate Harry Illes-Mann.