I was on a call last week where I found myself giving input into a brand strategy not as strategy consultant but as a patient advocate. My day job is advising life science’s companies on how to engage with their customers using digital technology. This includes everything from reps using edetails with physicians through to using social media for patients. In addition to my day job however I am also a patient advocate for Hashimoto’s disease.
It was with this hat on that I had a discussion with the brand team about patients and patient advocacy. One question that came up was what makes a good patient advocate. I have my own opinion on this but after the conversation I did a quick google to see if there were any thought pieces on this. What struck me was that most of the top results in Google talked about what I would call “professional” patient advocates, i.e. people who actually do this as a job. It also struck me that most of them talked about the role in helping patients navigate the healthcare system or engaging with their HCPs. None of the top results talked much, if at all, about the role of patients in supporting other patients around their disease. There was no mention of the role of social media. This is quite a different reality to mine and that of other volunteer patient advocates I know.
In my role of as a patient advocate I share my experiences and expertise with other patients. I share the impact changing my diet has had. I give them advice on how to cope with the symptoms of the disease. I also encourage them in their discussions with their physicians, or in seeking a new physician who will listen. I also do not do this professionally and do not get paid for doing this. My channel to communicate with other patients is social media.
So when the brand team asked me what makes a good patient advocate I did not talk about “navigating healthcare systems”. I did not talk about having the right qualifications. I talked about my reality and that of other patient advocates I have met. For me it is all about passion. It is all about personal experience and connection. This is not a paid job but I sometimes spend hours a week doing it. That requires passion.
I am not a medical professional so I cannot give medical advice. I can, however, share my own experience and that of other patients. Being well connected and knowing how to navigate the online world are also key. I need to be able to direct other patients to useful resources.
Being a patient advocate for me also means being empathetic and humane. I often have to give people hope and support. I have to understand that their situation may be different from mine, but still be able to support them.
It was these qualities in others that gave me hope when I hit rock bottom medically. I had days so ill I could hardly physically get out of bed. I sometimes struggled to string a sentence together and my memory was totally shot. At this point in time a specialist told me it was all in my head. The despair I felt at this response was absolute. It was through social media that I found the support I needed to keep going. It was through social media that I found other patients who understood and encouraged me. It was through them that I was given hope. It was online that I found the information that changed my life and gave me my health, and life, back.
It is this experience that gives me my passion and compels me to help others. If I can help other patients avoid going through what I went through, or getting their lives back like I have, I will have succeeded. It is this collective experience and engagement that now gives me far more insights into my day job than I ever had before. These are not things I learned on a course but things I learnt through my own bitter experience.
The passion that drives me, and other patient advocates, should not be underestimated. We are a group that want to be heard and can be fiercely protective of our collective. We are individuals, each with our own story and experience. We are often overlooked by the professional side of the industry but can mean the world to other patients. If you are looking into insights around a disease make sure you speak and listen to us.