Trust: Another Buzzword

It seems like every year there is a fixation on a buzzword surrounding the rocky relationship between healthcare companies and patients. From my experience, 2018 was the year for “patient engagement”. Every conference, meeting, advisory board, and conversation focused on this idea. If you spoke to 100 people about what exactly “patient engagement” means, you would get 100 different answers. 

What does that mean? Patients were not being “engaged” consistently. We heard the phrase repeatedly, but oftentimes those using it completely missed the mark. 

So what is the 2019 buzzword? Trust. 

Healthcare companies must have the trust of their patients in order to succeed, but building it goes well beyond just talking about it. When I think about trust, I remember the scene in Mean Girls where they are doing trust falls in the gym. Some companies come off as Janis Ian and are celebrated. Others take an approach like Regina George, where patients will let you hit the ground because they can see how disingenuous you are. 

Which brings up the question: how do you create trust with patients and patient communities?

Instead of focusing on the buzzword, consider what actions build trust. Going back to my Mean Girls reference (forgive me), a trust fall requires that people are there to catch you. How can you expect to establish a relationship where someone will be willing to extend their arms, if they don’t know who you are?

I see a lot of healthcare companies get this wrong. Just existing is not enough. Having social media, putting out press releases, or handing out swag at conferences will not build the relationships necessary to have patients work with you. Additionally, building trust is a two way street. No one is going to catch you falling if they can’t rely on you to do the same. That’s where you become a Regina George, and quite frankly wearing pink on Wednesdays doesn’t always work. 

Building true connections by getting to know patients and patient communities is the key to creating a mutually beneficial relationship. Whether you are a hospital, pharma/biotech, physician practice or health data/IT company, everyone has a responsibility to engage on a higher level, more than just making an appearance or talking about the latest buzzword. 

In my experience helping companies build “trust” with their patient consumers, I have found that everyone wants to be engaged, they just don’t know where to start. It is like walking into a party where you only know the host, there is no dog to pet in the corner, so you are forced to walk up to groups of people and introduce yourself. Once you start, every party becomes easier, the communication is more streamlined and you start to make friends. The greatest hurdle is making that initial introduction, especially for companies where various departments need to partner with patients. 

When creating plans to build “trust” with patients, whether it be for research, marketing campaigns, advertising your healthcare app, or inviting people to take part in sharing their data, you have to build relationships beyond repeating buzzwords. Employees responsible for creating programs, products, and devices for patients should be involved with their target audience. This is especially true for clinical trial recruitment, where many patients cite a lack of trust with pharmaceutical companies as a main reason why they would not participate.

Think about it this way: if you were to do a trust fall, wouldn’t you want to know who was catching you?

Becoming an Empowered Patient

Becoming a patient is automatic, the minute you are born you become one. As you go through life you become a patient to more healthcare providers. The title is what you make it, decades ago patients just listened to their doctors. Now, we have to listen and discuss any issues related to our health. It many ways it is easier said than done. So what do we do to become an empowered patient (or encourage someone to be)?

Continue reading

Why Patient Data Should Be Shared


I attempt to keep my paper data organized with folders.


Sharing patient data is a hot topic right now. With HIPAA being misunderstood by many people and the fear of privacy being violated, most people cringe at the thought of releasing their health information to others. What if I told you that by donating your data and remaining anonymous, you could potentially save the lives of other people? In the rare disease community, this is how many people think. If you don’t think this way, I’m here to tell you why you should.  Continue reading