Where’s the proof? What evidence do you have? Data is important and valuable. In public health we often speak of the “evidence base” and want to be sure there is data to back our decisions and interventions. As individuals and patients we can create our own database by writing notes of our symptoms and feelings and what transpired during our medical appointments. There are two types of data: qualitative and quantitative. Qualitative data describes characteristics and is obtained through interviews, focus groups or observations. Quantitative data quantifies, it can be counted and measured. For example, writing down your blood pressure readings over a period of time is quantitative data, writing down your feelings such as “I woke up lightheaded” or “my head hurts every time I am exposed to bright light” is qualitative.
Documentation is one of the many strategies that our guest Julie Piette uses to advocate for herself and her family. Last week on the podcast, in the episode titled “Can’t argue data!”, Julie shared this and many other tips. I have summarized some of her best practices below:
Tell people what you need/are looking for, you never know who may be able to help.
Always ask for copies of test and lab results.
Tell the doctor what the other doctors have said, what your complaints were at the time and how you are feeling now. Taking good notes can help with this.
If you are sick don’t hide it from your children, they will know and feel that something is wrong even if you don’t say anything.
Be honest in any surveys or health forms you are asked to fill out.
Be observant and take notes between appointments so you have information to share with your doctor. As Julie says, “you can’t argue data!”
Ask for help and seek out support groups.
Ask questions, do not worry about looking stupid.
Be honest with yourself about your feelings.
Let go of the barriers and talk about your feelings as a family.
You’re the only one who knows how you are feeling, so don’t be shy, speak up for yourself. If you don’t feel comfortable saying the words out loud to your doctor, write it down and give them the paper. Be open and vulnerable with the practitioner, they want to help.
Be a pest if necessary. If you need an appointment keep calling or even show up at the office.
These are just a few of Julie’s keys to success in advocacy. For more tips and context, listen to the full episode!
All of Julie’s suggestions are truly amazing but number 6 is probably my favourite. The importance of documenting and taking notes cannot be overstated. The more information you collect the more helpful it will be for your doctor in making a diagnosis and for you in terms of keeping track of all the feedback and actions that you need to take or follow up on.
See you in the cafe next Thursday for the release of a new podcast episode!
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