Empowering the Expert Patient
Inspired by Angelina Jolie's honest discussion of her recent decision to undergo surgery to remove her ovaries to reduce her cancer risk, Apple a Day is looking at the role of the expert patient, and what we can learn from those who have direct experience of the disease they raise awareness of.
Angelina Jolie spoke up this week about her new cancer scare with an open and thoughtful column in the New York Times, prompting us here at Apple a Day to think about the role of the ‘expert patient’.
This is the second major chapter in her public health journey since she wrote about her decision to have a double mastectomy to reduce her risk of the breast cancer that had killed her mother, aunt and grandmother. Angelina’s openness has done a lot to give support and encouragement to women facing a frightening treatment decision after discovering they have a mutation in the BRCA1 gene, which makes them highly predisposed to developing breast and ovarian cancer.
Her writing this week was also powerful in her lack of embarrassment in addressing the topic of early menopause – being brought on by her recent operation to remove her ovaries and fallopian tubes. Many women are reluctant to speak - except with very close friends - about what is a natural stage in life, for fear of being seen as aging, unfeminine or even slightly crazy. It must be even more difficult for younger women facing early onset of menopause – whatever the reason.
It was interesting to see this aspect of Angelina’s health and writing being picked up in some media, highlighting that all women should take heart from this if someone as famous and feminine as Angelina is not afraid to speak out about her own experience with menopause. Patient experts are playing an increasingly important role in not only educating the community, but increasingly in the health system itself.
In the UK the NHS defines an expert patient as someone living with a long term health condition, who is able to take greater control over their health and quality of life by understanding and managing their condition.
The goal is for the patient to gain confidence and feel more in control of their life, manage their condition and treatment in partnership with healthcare professionals and share responsibility for treatment. It is also about being realistic about how their condition affects them and their family, and using their skills and knowledge to lead a full life.
At Apple a Day we see the expert patient as someone who also uses their knowledge and experience to benefit other people who may be affected by the same condition – such as Angelina - and also act as agents of change. Agents of change are often at the helm of patient support groups, initially set up by passionate individuals affected by a disease or condition – either themselves or a loved one – who want to help others affected whether by providing support and information, or even helping to improve management or drive health policy change.
The NHS has an Expert Patients Program to support people with a chronic condition to increase their confidence, improve their quality of life and manage their condition more effectively.
According to the European Patients Forum, patient-centred care models, where patients are involved as active partners in care, are already showing a contribution to higher quality of care, a better patient experience, as well as potentially lowering costs in the long term.
And this week patient leader Ceinwen Giles, speaking at the Kings Fund conference, urged politicians and the public to really think of patients as leaders of change and encouraged the NHS to increase their efforts from the NHS to involve them in the design and development of healthcare services. This is now also becoming an increasing focus for many pharmaceutical companies, not only to help inform and shape their communication, advocacy and policy efforts, but right down to clinical trial design that will meet patient needs.
The expert patient does not need to be a celebrity to be a powerful influencer.