A knowledge transfer program designed by and for patients, family champions, advisors and/or advocates working to improve patient safety (Patient Champions) offered by the World Health Organization’s Patients for Patient Safety Programme, SickKids Hospital and Patients for Patient Safety Canada.
Highlights from the May 7, 2015 Knowledge Transfer Webinar
Knowing when you are ready to partner: good questions to ask yourself
- It is important to know yourself and understand what could be a difficult experience 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 is 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 are 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 and/or broader issues (e.g. education, transitions in care)?
- Consider how you want to be involved. Do you just want to share your experience or do you want to participate in committees/ working groups?
Concrete steps for making it easier to partner
- When representing the patient voice, it is imperative that you are heard and understood. Be prepared!
- Ask questions: get details of the request – who is the audience or group, what is expected of you.
- Find out who is your contact before and during the collaborations and what they can do to support you.
- Know in advance where to go, where you will be sitting, how you will be introduced, and what else is on the program/ 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 (e.g. 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 a mindful practice, reflection, writing/ journaling.
- Be mindful of your personal grief. It is 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.
- In some cases it helps to have someone you can trust and connect with (or available by phone) to provide support and feedback. It is good practice to have two patient representatives participate.
Alleviate stress through physical activity and by getting enough sleep.
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 of Family -Centred Care Advisory Council, SickKids Hospital