Experts by experience may sound like another pseudo trend term invented by individuals in the healthcare field, with little explanation behind it. However, the ‘experts’ themselves are a goldmine of knowledge, understanding and first-hand experience of healthcare systems. These individuals are extensions of what were once known as “Expert Patients’.
Expert patients are identified as individuals who have the confidence, skill, knowledge and information to self-manage their own chronic or long-term health conditions. They are able to take more control over their health by understanding and managing their conditions, which leads to an improved quality of life. Expert patients are often more empowered and can often consider seeing a doctor about their condition as a failing on their own behalf for not better self-managing and maintaining their health. This can often challenge the status quo of the stereotypical doctor-patient relationship and for over 10 years the notion of expert patients has been as widely criticised by doctors as it has been welcomed.
Expert patients are known for scoring high on the “Patient Activation Measure” (PAM). PAM ascertains the knowledge and skills of an individuals at managing their own health and care with confidence. This requires clinicians and other health professionals to support patients by giving personalised care which supports people to recognise and develop their own skills and knowledge base to self-manage and self-care effectively, this is often referred to as improving health literacy. Providing an asset-based approach to care through co-production/co-design enables the expert patient to build capacity and the capability to manage their own care through increased knowledge which is easy to understand and act on.
The term ‘Experts by Experience’ is relatively new, however, the idea of patients with long term conditions taking control and a shared responsibility for their health and wellbeing is not. Experts by Experience can also be applied to carers of patients with chronic disease or long-term conditions.
The Care Quality Commission (CQC) defines Experts by Experience as “people who have personal experience of using, or caring for someone who uses health, mental health and/or social care services that we regulate”. The CQC themselves have established an Experts by Experience programme where they work alongside experts in order to better regulate health and social care services because they appreciate that these individuals “know better than anyone what to look for and what questions to ask”.
Not only does working with these experts create positive reinforcement of their behaviours and activities but it promotes a change in how others view their own health and care and the ability to navigate healthcare systems and processes. Studies have shown that programmes which teach self-management skills are more effective than information only approaches. Self-management education has been shown consistently to improves patient outcomes and also reduces the cost of caring for patients with chronic or long term conditions. The programmes brings patients into the same space, creating a community of information and resources and gives them autonomy, which is a key component to effective care and improved patient outcomes.
Experts by Experience are one of our biggest sources of knowledge, experience and intelligence. They have proven what works best and what doesn’t. Giving the current significant financial strain on the health and social care system with continuing budget cuts, the experts by experience model is recognised as a cost-effective approach to decreasing unnecessary demand on health and social care services. The growing collaboration of senior NHS decision makers and Expert Patients or Experts by Experience has led to a increased focus on the benefits of co-production, co-design and co-creation. It is interesting that the NHS are only now beginning to work collaboratively with their patients to design services, in any other market organisations work closely with their customers to market test their product or service. If you want any service to be successful and meet the needs of your audience you need to engage with your user.
Many experts by experience have used their expertise in condition management to develop and create products and services which will support others with the same conditions. What better support than from someone who knows exactly what it is like to live with a condition 24/7. Over the next few weeks we will be introducing you to some amazing individuals who we have had the pleasure to have met and be associated with, Andy, Marissa and Jake. Put simply, they are inspirational and humbling and we consider ourselves lucky to have them in our lives. Andy, Marissa and Jake are not only experts by experience they are all passionate advocates of peer to peer support and the further adoption of co-production and co-design. Andy Lavender has been recognised by the HSJ as one of their awarded patient leader and works tirelessly to support anyone with diabetes or pre-diabetic indicators. Please stay tuned and follow our social media channels to see when we will be posting our wonderful inspirational words from Andy, Marissa and Jake.
