How to Care for Yourself When Representing the Patient Voice

A knowledge transfer program designed by and for patients, family champions, advisors and advocates working to improve patient safety (patient champions) was offered by the World Health Organization’s Patients for Patient Safety Program, SickKids Hospital and Patients for Patient Safety Canada. These are the highlights from the program’s Knowledge Transfer webinar on May 7, 2015. 

Knowing when you are ready to partner – good questions to ask yourself 

• It’s important to know yourself and understand what a difficult experience could be for you so that you can plan for it – or decide that perhaps now is not the right time. 
• Don’t wait too long to participate. Once you feel inspired, jump in somewhere, partner with others and go with your heart! Get involved - it’s crucial to changing the system.  
• Reflect on what drives you. Are you ready to partner with healthcare providers, or do you want to seek justice or immediate change first? Those who get involved because they’re looking for accountability may find that partnering with providers to make care safer is not a good fit for them. 
• Consider the issues you want to work on. Do you want to focus on issues specifically related to your experience or, more general, broader issues (for example, education or transitions in care)? 
• Consider how you want to be involved. Do you want to share your experience, or do you want to participate in committees or working groups? 

Steps for making it easier to partner 

• When representing the patient voice, it’s imperative that you are heard and understood. Be prepared! 
• Ask questions: get details of the request – know who the audience or group is and what is expected of you. 
• Find out who your contact is before and during the collaborations and what they can do to support you. 
• Know where to go, where you will be sitting, how you will be introduced and what else is on the program or agenda. 
• Find out if the media will be present, as it can change the tone. Ask for resources and support so you can deal with the media in a positive way (for example, use key messages and repeat learnings). 

Harness your passion – take good care of yourself to be the best you can be 

• Partnering, especially telling your story, can be emotionally draining. Adopt mindful practice, reflection, writing or journaling. 
• Be mindful of your personal grief. It’s okay to say NO, if the request is too close to a significant anniversary date or an emotionally charged time for you where you may feel more vulnerable. 
• Eat well, stay hydrated, and breathe! 
• Ask your peers for advice; sharing stories can help to engage positively. 
• Sometimes it helps to have someone you can trust and connect with (or available by phone) to provide support and feedback. It’s good practice to have two patient representatives participate. Alleviate stress through physical activity and by getting enough sleep. 

Speakers 

• Sharon Nettleton, co-author of Harm to Healing: Partnering with patients who have been harmed 
• Martin J Hatlie, JD, CEO, Project Patient Care 
• Sabina Robin, member, Patients for Patient Safety Canada 
• Manvir Jesudasan, Chairman, Patients for Patient Safety Malaysia 
• Sitara de Gagne, family advisor, member, the Family-Centred Care Advisory Council, SickKids Hospital