There are two things guaranteed in life: change and death. Two things possibly no one understands better than the patient community.
Our health and healthcare is forever changing. From unpredictable medication costs and sporadic symptoms, insurance and coverage changes on a state and federal level. — And death? Well, while inevitable, it’s something we as patients are constantly forced to face the most. Power of attorney, risk to benefit analysis of new [and old] medications, entrusting our lives to people we’ve often never met before. * And I’m only scraping the surface of our reality. * To be very blunt, ultimately, it’s all to avoid death.
My point is, patients are qualified. Patients are forced to make and live with tough decisions constantly. Life altering decisions. Life THREATENING decisions. We need a seat at the table. We deserve a seat and if not offered, we need to take it.
Take a Seat
I’m tired of sitting back as other people make huge decisions that impact me the most. I walked into the “advocacy” world for a few reasons. – One huge one being the gaps I saw in healthcare. As someone living with a chronic, autoimmune condition who has been forced to live without insurance, why wouldn’t my voice matter in conversations regarding what it takes to keep it? As someone who is directly impacted by the lack of diversity in the patient-facing content of the healthcare industry, why shouldn’t my voice be heard in conversations to address and correct the issues? So I took a seat.
I must say, the 2014 Shawn had no idea I could ever make a real difference. I mean, what did I possibly have to offer the world? Other than high medical bills and a-whole-lot of pain?
I must admit, for a while I was all talk. – No literally. I was all about online jabber and pictures showing my stomach. It was good, for a while at least. It was my way of coping at the time and I really believe it helped other patients to see they had someone they could relate to. Someone who understands. – Not to mention how therapeutic it was for me to be able to speak my mind freely. A safe space where I could be 100% myself. I’m not sure how much it normalised my condition for the general public, but it certainly helped me to normalise it internally.
But there’s more to be done. Taking the same photos and posting them on Instagram with the same captions is only going so far. We need tangible change. There’s so many gaps in the healthcare industry and only patients have the knowledge to fix it. We’re the only ones who see it! We’re the ones impacted by it.
What You Can Do Now: As a Patient
This is a topic I covered before in Patient Advocacy & Politics: How To Take Charge of Your Healthcare & Create Change in Your Community. – And I stand behind every single word. You can be a patient advocate without a blog or showcasing scars on Instagram. * #GUILTYASCHARGED * You can be a patient advocate without being excessively positive [and on the flip side, excessively negative].
Adding to the tips & advice I’ve already given in the past, I’d say my number one is knowing what you’re getting into. Understand advocacy is about balance: a lot of learning, a lot of sharing. As passionate as I am, I have come to realize that not everything I thought I knew was fact. Not of the pharmacy industry, not of politics or healthcare as a whole. You have to be willing to learn in order to make a positive and meaningful impact.
Tip number two would be to realize you can’t do everything alone. None of us can. I speak more on this topic in my post, The Power of You. It’s true, each of us are so powerful and our individual strengths and experiences can take us so far, but together we can go much further. Use partnerships to your advantage. Keep business cards and be creative. Think of things you can do and ways you can work with different people and companies that may be different from what they’ve tried in the past (to inspire the change you’re hoping to make).
Tip number three is to accept: the profit is in the progress. There’s not always a financial benefit to gain. You have to be passionate about whatever it is you choose to focus on.
Online is great, but take it offline if possible. — Not everything that needs to be done is available for online access or public access in general. There are times when attending an event or scheduling an in-person meeting is required and necessary.
What You Can Do Now: As a Company or Healthcare Provider
Include patients in events and decision making. I discuss a few benefits to this in 5 Important Benefits of Including Patients and Patient Advocates in Healthcare Conferences. Once again, another article I still very much stand behind. There truly is power in the patient voice. Professional advice is one thing, but personal experience is a different ballpark entirely. Patients trust patients. We rely on each-other.
Ask for feedback, constantly. Healthcare is constantly changing and so are the companies that have influence in the industry. If you are a person or work for a company, with the power to create change, ask for feedback before you do it. Schedule quarterly calls or meetings. Follow up. Patients are a direct source for valuable, first-hand insights on what’s working and what needs to go!
Provide two things: support and opportunities. Help patients build themselves, just as they are helping you to build your brand, company or impact.
Remember: We can’t do it alone and neither can you. Without patients, there would be no healthcare industry. You need to hear from your consumers. – Not just hear, but listen. Patients are no longer settling. We are standing up for ourselves and our rights.
I want to close this by giving a huge shoutout to all of the amazing people and companies in the healthcare industry that I’ve had the opportunity to partner with. You guys are truly amazing and I appreciate every email, every call, every meeting, every initiative that’s come from our work together. I know it has to be hard to carry such a heavy load on your shoulders, but I will speak for the majority when I say, we SO appreciate it. – And it’s necessary. – It’s time for some much needed changes.
All of the people in the photos above have not only acknowledged this, but have gone the extra mile to take charge and do something about it. I am so grateful for how far we’ve come and look forward to further improvements and future progress.