Here we go. The start of 2019. A blank slate to make our mark.
As patients, this year we have even more opportunities to use our voices and be heard!! In Canada (and many other countries) there is a growing movement to include patients in a more meaningful way in healthcare (versus just a checkbox on a list).
A hot topic of conversation in many provinces is how (or if) patients should be compensated for their time when volunteering as an advisor or speaker. What’s exciting about this conversation is the fact the importance and value of the patient voice and experience is starting to be recognized as an important piece of truly providing patient and family centred care.
This is good news for you as a patient. Yes there will still be healthcare providers who ignore patient input, but there are now more ways than ever before to have your voice heard.
Twitter - Twitter is full of individuals who are passionate about patient advocacy, stemming from a personal experience. Start following a few individuals and groups, jumping in on the conversations. I’ve learned a lot about patient advocacy, and gotten some sage advice, by following some of these patient advocacy leaders. Some of the ones I follow include Maggie Keresteci, Inclusion BC, Julie Drury, Dr. Brian Goldman, Sue Robins and Carolyn Thomas, to name a few.
Facebook - There are a number of patient advocacy groups you can join - either broad or related to a specific issue. These are a great way to pose questions, read about other patient successes or challenges, and have a deeper dialogue. Many of these are closed groups, but a quick search of either the specific topic (autism, MS, patient advocacy) and you’ll come up with groups in your area (or broader).
Health networks - Depending on where you live, you can join provincial or regional health networks as a volunteer. For example, in BC patients can register with the Patient Voices Network. You don’t need to volunteer right away. Rather, it’s a great way to learn more about patient advocacy and ways to have your voice heard (when you’re ready).
Local organizations - A quick google or Facebook search will come up with patient organizations in your community that you can join or attend meetings. If you live in a large city, you will have many opportunities to meet other patients and share knowledge and experience. For those of us living in rural areas, you might not having something specific to your health concern, but there are often still ways to connect with other local patients (virtually or through a provincial organization that can make local connections).
These are just some of the ways you can reach out, learn more about patient advocacy and have your patient voice heard. What’s great about each option above is you can participate as much or as little as you want.
What’s most important is you realize as a patient you have a right to have your voice heard. And when you’re running into roadblocks, or are lacking the confidence, there are people all around you who are willing to support you.
I promise, 2019 is going to be a fabulous year for patients to have more say in transforming healthcare and creating the patient and family centred care we’ve been promised.