- Most people report satisfaction with their experiences, however there are some pretty mixed results
- Some analysis shows higher treatment adherence and increased patient participation in treatment - this suggests that simply doing any form of treatment is more important than the specific treatment received
- By having much of the data come from self - managed cases and self reports rather than representative samples does call the validity of these data into question
- Overall, the data does not indicate that patient led treatment will yield better outcomes than professional ones

University of Virginia, Charlottesville

Due to an ever evolving social and economic world, healthcare needs have changed drastically over the decades. These changes have influenced the lived experience of people with chronic illness and disability. This is because these individuals have an added struggle of not being perfectly healthy. A growing body of research focuses on the relationships between society, the self, disability, and illness. 

Chronic Illness, Expert Patients and Care Transition

Taylor, D., &amp; Bury, M. (2007). Chronic illness, expert patients and care transition. Sociology of Health &amp; Illness, 29(1), 27–45. https://doi.org/10.1111/j.1467-9566.2007.00516.x 

Chronic Illness, Expert Patients and Care Transition Reference

- In the UK during the 1970’s, a push towards bettering public health began
- Prior to this, chronic illness and disability had been largely ignored in the public health policy discourse
- The general consensus ended up being that those who are ill have the most expertise in recognizing symptoms and knowing what ill and disabled individuals need
- Self - management of chronic illness and disability became a tenant of public health policy and led to the development of the Expert Patients Programme (EPP)


Policy Formation and the Origins of the Expert Patients Programme

- Disease mongering works to make people think more people are sick than they are - additionally, many people resist living by the label of “disabled” or “chronically ill” which can skew estimates
- The second issue is that policy may be put in place to help chronically ill people, but enacted treatment may be geared towards changing patient behavior (runs the risk of blaming the patient)
- The third issue was policy makers pushing the EPP and self - management of care as an NHS idea rather than a continuation of existing work 
- Fourth, each person’s experience with chronic illness is unique and changes over time as well as their relationships with their doctors



Four Key Issues 

EPP Effectiveness

- Self - efficacy is a psychological principle that refers to a person’s belief in their ability to do things that are necessary to achieve their goals
- This can lead to increased perseverance and resilience - characteristics often associated with those living with a disability or chronic illness
- These self - led programs taught problem solving skills rather than solving the “problem” of chronic illness

Self Efficacy for Enhancing Self Care 

While no evidence exists that patient led treatments yield better results than those administered by professionals, it is important to recognize the positive modeling these people provide. They show others that it is possible to receive treatment and do well. The most important takeaway is the individuals who participate in self - led programs increased their levels of self efficacy. This allowed individuals to believe more in their ability to get better and push through health obstacles. While not extremely important in the short term, the mindset shift self efficacy provides will most likely influence how policy is made in the future. That is, teaching people with chronic illness and disability health focused problem solving skills needs to be prioritized. 

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