The Patients’ Perspective, serves to share the experiences or opinions of advocates that might be of interest and value to ISQua members. In this column, I will share a bit of insight into the world of patient advocates.
Becoming a Patient Advocate
In 2004, Sir Liam Donaldson and the World Alliance for Patient Safety initiated a global network of “Patients for Patient Safety Champions”. Sir Liam realizes that patient narratives are an important catalyst for change and that the patient voice is a necessary contribution at all levels of care. There are now 254 Champions residing in 52 countries. We have a list serve developed by WHO where we can share ideas and accomplishments.
To be eligible to be a Champion, one must demonstrate in their application a willingness to collaborate with others to improve the quality and safety of care. Those who are accepted include patients or family members who have experienced harm or providers or administrators who are very interested in collaborating with patients. Once an application is accepted, it is necessary to attend a Patient for Patient Safety workshop before obtaining Champion status. The workshop ensures that all Champions understand the history of patient safety and the theory of just culture.
In addition to the Champions, there are numerous open patient safety groups where patients or family who have experienced harm can receive information, direction and support and learn how they can make a difference in the system.
What do Patient Advocates Do?
Patient advocates encourage improvements within the health care system. They speak at conferences, workshops, schools and hospitals. They serve on committees, hospital-based patient-family advisory councils and boards, and undertake research with providers. The best outcome occurs from the formation of a patient-provider partnership.
Patient advocates also contribute to the education of the public about safety issues. They work with the media and publish books that are geared to empower patients. I believe that these books would be of interest to professionals who specialize in quality and safety improvements because they would allow these providers to see the potential that patients and their families have as members of their healthcare team and to reduce the risk of harm.
Very often, patients or their families who have suffered harm realize that if only they had known they could have taken actions to prevent harm. Examples of these circumstances include improved communication, calling for help sooner and double checking medications. The books that advocates have written serve to empower patients by providing them with information and checklists that might prevent harm. I have found that providers are very often hesitant to inform patients of risk because they don’t want to scare them. Yet, if there is something that the patient might do to mitigate the risks, do they not have the right to know?
Research regarding how to educate and involve patients for better outcomes is ongoing. It has been established that the attitudes of and invitation to be involved by providers is key to the involvement of patients. A recent study involving 110 patients and 123 healthcare professionals reported that both groups are quite willing to participate in safety-relevant behaviours related to the blood transfusions. A very hopeful sign! The patient-provider relationship is changing rapidly. I believe that this change will lead to a safer, higher quality healthcare experience.
 The Empowered Patient: Hundreds of Life-Saving Facts, Action Steps and Strategies you Need to Know, Julia Hallisy
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