Tell us a little about yourself and your patient advocate work.
Professionally, I’ve spent 20+ years in healthcare administration in various sales, training, management, tech, and operations roles. Personally, I am primary caregiver to our intellectually/developmentally disabled 15 year old son and a stage IV colorectal cancer survivor. Because I knew how to speak “medicalese” and was advocating for my son since he was born, I became regarded as somewhat of an “expert” pretty quickly in our cancer support community, and that role just continued to expand. Patients find my story online, contact me, and I do the best I can to voluntarily help them. In between my own care and care of my son, I speak/consult for companies and practices who wish to be more patient centric. Because I’ve been on all sides of care, I can say, “I’ve been there and I get it” probably more than anyone else I know. I’ve had to chase down doctors for diagnoses codes on encounter forms, go toe to toe with insurance companies in appeals, and fight for my life. I’ve been in numerous different clinical trenches side by side with amazing people who continually inspire me. I’m proud to say that as a patient and caregiver, I “walk the walk” every single day and do everything I can to improve the lives of both of these groups.
What’s one thing healthcare marketers should know about marketing to patients during COVID-19 and as we hopefully head to post-COVID?
COVID-19 showed us that in the blink of an eye, any one of us can be a patient. For people who haven’t dealt with that level of vulnerability previously, it was a real eye opener. Therefore, our society is super dialed in on health right now. Healthcare marketers have everyone’s attention so there is opportunity. But as the saying goes, “With great opportunity comes great responsibility.”
Patients have shown that we can process technical knowledge (i.e. adoption of telehealth) in warp speed. With 89% of patients consulting the internet (“Dr. Google”) before seeing their doctor in person, I would hope that healthcare marketing focuses on education and dispels the spread of misinformation. The ideal scenario would be a patient sharing a marketing discovery with his/her/their clinician in a non-threatening way that fosters collaboration on a product, service, or technology which leads to better outcomes for the patient.
What are some examples of healthcare marketing gone wrong that you’ve seen as a patient/caregiver or heard about?
My most memorable story was a client who needed to enroll patients in a clinical trial upon diagnosis of cancer but before treatment. I told the Chief Medical Officer, “If you would’ve woke me up from my colonoscopy, told me I had cancer, and handed me a brochure about a clinical trial, I would’ve punched you.” There was dead silence and I thought I was fired. Then, I asked if anyone on their leadership team had ever had cancer. The answer was no. It was an a-ha moment for them and one I used to teach empathy – mostly the emotional/mental turmoil that ensues once you hear the words, “You have cancer” and how it takes a while to sink in. They were so focused on their business objective that they lost sight of what the patient was experiencing at that moment. We developed collateral that was more compassionate and walked a patient from diagnosis to treatment options, which included their trial. I’m super proud that I was able to add a patient perspective to that project.
Do most patients love personalized communication or does it make them worried because of privacy? How should marketers walk this fine line?
It all depends on the source. If it’s from someone on our medical team in our trusted clinical circle, then it’s fine. It makes us feel like people instead of just patients, and privacy is implied under the auspices of our ongoing care. If it’s some random pharma, biotech, or digital tech company using personalization for phishing purposes, forget it. Patients can see through all of that.
Any chronic illness community will tell you that we are a cliquish and skeptical group – meaning we need to hear it from one of our own if we’re going to believe it. This is why you see so many companies going the way of the “patient ambassador” or focus group. It’s a way to deliver a message from within the ranks.
What are the keys to respectfully including patients in your marketing efforts?
Patients/caregivers have a saying: “Nothing about us without us.” So, the first and best way to include patients in marketing efforts is to ask us how it should be done. Working through a non-profit organization for a particular disease or chronic illness is a great way to tap into hidden advocacy talent, as well as help support that NPO’s mission through social responsibility. Also ensure that any efforts take into account vulnerable or marginalized populations. In other words, make sure marketing messages are available across many different forms of media (e.g. print, digital, visual, audio) that contain inclusive language/images and are accessible to any/all patients with a variety of disabilities and impairments. And please be gentle. Patients go through a lot – more than we let on. We’re tired. We need some love.
What can the HITMC community do to help you?
You’ve helped me by welcoming me with open arms and celebrating two milestones I never thought I’d see – my 50th year of life and 5th year of stage IV cancer remission. There are a million other Stacy’s out there who want to be heard and included in your community; who need their stories told, their voices amplified, and their insights valued. By including me in your 12 Days of #HITMChristmas, you’ve shown that you want to make that happen. And I hope I can help YOU by showing that patients and caregivers can jump on a Twitter chat at any time and feel just as comfortable, special, and supported as you’ve always made me feel. Merry Christmas!
Be sure to follow all of the 12 Days of #HITMCChristmas.