There are many definitions that describe patient advocacy. A patient advocate is classed as a person who helps guide a patient through the healthcare system. This includes going through screening, diagnosis, treatment and follow up care. An advocate helps patients communicate with healthcare providers as they get the relevant appropriate information patients need to make decisions about their healthcare. They make complaints on behalf of the patient when required.
My own personal understanding of what advocacy meant initially was that advocates spoke up for the most part for those who suffered inequality, exclusion or discrimination. Vulnerable patients for example who lived in community care settings or suffer with mental health difficulties or who were battling cancer. I mistakenly believed advocacy was only for those who aren’t in a position to speak for themselves. I believed that patient advocate groups were big organisations that only fought for patient rights, gave patient representation, built awareness and gave support and education. Patient advocacy is so much more than that.
Since first sharing my personal experience my whole perception and understanding of patient advocacy has changed. Patient advocates can be anybody who gives a voice, or acts on behalf of patients, by informing the public, the political world, stakeholders or healthcare professionals, about life with obesity and what appropriate care and treatment is needed. I realised for some of these instances, that’s me!
As a patient of the Weight Management Service in Dublin since 2009 I joined the online patient support group and after some time I became an administrator for the group and have become more and more involved. I came up with some ideas how patients could support each other and help themselves.
Patient family walks suitable for all fitness levels, healthy lunch support meetings to swap recipes, and patient activity programmes for those living near each other to meet up and encourage each other to get moving.
I was already without knowing it, acting in part as a patient advocate! I have became a patient representative with EASO and ASOI and have shared my experiences as a patient who has lived with and still battles with obesity. I have spoken at an EASO policy conference, spoke at the European Congress on Obesity and have spoken at many Irish conferences.
The more I am involved, the more I want to be involved!
So how can somebody start to get involved as a patient advocate?
Patients can start by supporting each other by simply meeting up.
This can be arranged anywhere that is suitable for a small group to meet and share their experiences. Online support groups, once private, are very successful in patients supporting each other. There is powerful strength in numbers for patients to collectively help and support one another.
A good few years ago the Irish government withdrew funding for bariatric surgery to be performed in the public health system. Statistically Ireland is behind other European countries in the amount of surgeries performed per year. The waiting list was growing increasingly with waiting times up to six years from finishing the programme with the multi-disciplinary team.
Patients in the Dublin support group gathered together and approached their local politicians demanding answers about the surgery cuts. It was raised as a parliamentary question many times why this life saving, cost saving treatment was denied to those in critical need of it.
Patients put their privacy and anonymity aside and went on national television, radio and newspaper interviews to highlight the urgent need and benefits of this service. Funding soon after was restored and since then a new surgeon was employed and the waiting list has began to move along faster.
There is no proof patient involvement created this positive change but the empowerment it gave patients to use their voices was incredible and inspiring to witness.
Obesity is a complex chronic disease. Patients should be seen as partners in their own care. Not just people you do something to or for, but people you do something with.
Nobody has a greater vested interest in diagnosis and treatment than the patient themselves. Who better to work as a patient advocate than somebody who has lived through those struggles and experienced every aspect of this chronic disease first hand.
Now when I think about patient advocacy I don’t only think of the larger groups out there like The Obesity Action Coalition, or ECPO, I think of individuals who are involved every single day in raising awareness and trying to change opinions and acting as Patient Advocates.
There is huge strength in numbers. ICPO took a few years to come together, but we continue to grow from strength to strength.
Whether you are involved in your own local community or weight management service, or internationally, together advocates can create huge positive change.
Weight bias is defined as a negative attitude and stereotype against people with obesity. This causes exclusion and inequality in healthcare, employment and society. It promotes stereo types that people in bigger bodies are lazy, weak-willed or not intelligent , and this is linked with physiological and psychological health risks. This also leads to patients not seeking help. Every individual has the ability to advocate for patients with obesity. By changing the general misconceptions that a patient only needs to eat less and move more. By explaining that obesity is a chronic disease. That shaming people to try and be healthier doesn’t work. That negative stigmatising advertisements and news articles need to addressed immediately. That people first language should be used.
How can you get involved? Patients can highlight outcomes that matter.
Address gaps in care and treatment. We can provide feedback through survey responses which give community health officials and hospital leaders helpful feedback on the perceived quality and accessibility of healthcare services.
As advocates we need to change behaviour, raise awareness and educate starting with our very own families and friends.
We need to encourage and lobby for change. This can be done in many ways and one most effective being through social media. An example of this is the publishing of Cosmopolitan magazine with a plus size model on the cover. It sparked huge debate across social media with the regular vitriol from many about how the magazine was promoting obesity. In the past I’ve had to stop reading the comments as it was too hurtful and upsetting to read. For the first time ever I felt that there were just as many positive and encouraging comments from professionals and general public than ever before. From people who have not lived with obesity yet have some understanding of its complexity. Change is slow but it is happening because of patient advocates who are speaking out.
There IS trength in numbers and fighting for change. Strength in numbers can and will accelerate and increase the number of voices defending those who can’t do it for themselves.
Working together towards a common vision is the fuel that allows ordinary people to obtain extraordinary results.
Susie Birney
