You might know patients who are doing plenty of work to raise awareness for their disease. I’m guilty. Maybe you are a patient raising awareness by blogging, vlogging, instagramming or any other form of social media. In both cases you should read this blog, cause I’ve been disappointed. Not by one person but by the accumulation of various encounters I had with patient advocates. First the challenge, then a solution.
Most Patient advocates I’ve known for more than 5 years. Throughout the years we all change. Also our objectives in life. Across the years I by example came to realise how hard it is to establish (and follow) your own ethics. Nevertheless I believe that every patient advocate should consider their personal ethics in the work they are doing. It is a barrier to work yourself into social trouble. Some people throughout the years have presented themselves to the world in a certain way and once they started receiving money for advocacy jobs they focused less on their initial goal. This I find pity because you’re a patient advocate due to the fact that you aim to change and improve patient well being by your advocacy efforts.
Losing those principles is like losing your “why”. Lost in the woods thus. And in case you think I’m saying that’s easy, I don’t. It’s a hell of a job to weigh your goals with day-to-day actions. Definetly when you start to gain some attention and you want to make use of that. I’ve also made errors. Making up my own goals and ethical framework helped preventing the lost-in-the-woods syndrome.
Ethics might come over as a buzz word. Ethics are guiding rules that define what’s right or wrong to do and what standards are considered to be correct. Very basically explained. If you click the link you will find an explanation on what ethics is in depth.
When I talk to people who just started their patient advocate journey they have those bright ideas of how the world should look like. Always lovely to hear. Their primary actions are aligned with that vision. If I would ask them what their ethical framework for their advocacy framework is they’d be rolling their eyes.
So dear Patient Advocates, don’t be like some folks who just threw away their why and are doing fancy things which are no longer aligned to their mission as patient advocate. I have fancy and disturbing stories but I won’t share and blame. I’m just going straight to the solution I have on ethical principles that help you prevent the lost-in-the-woods-syndrome, especially known amongst financially endorsed patient advocates.
So how to start making up your own survival ethical framework?
- Define your goal
- Define what you find wrong and right to reach that goal
- In case you receive any renumeration ask yourself whether you block your goal directly or indirectly
Doing this might set you up for success.
Or at least help you in the right direction.
