It is a rare moment for most physicians to engage with patients beyond the professional encounter. Some friends may become our patients, and sometimes patients can become friends—few physicians, however, take active roles in patient organisations or interact with patient representatives on an ongoing basis. Even fewer physicians take on a patient’s role when they interact on social media (for example, as in Kate Granger’s campaigning work).
In patient safety there is a prevailing concern about those who are the “victims” of medical errors. Patients who have experienced a medical error and/or their family members can come to prominent public attention—often putting healthcare professionals and organisations in a defensive position. Yet only respectful dialogue—and an understanding that to “err is human,” “to care for others is human” too—can provide a basis for constructively working to prevent medical harm from occurring again.
It is easy now to understand how patients sharing their experiences of a procedure or journey through a particular care pathway can open up a new perspective, which has not previously been thought of by health professionals. But in 2005 it was the EU Patient Safety Summit in London that served to introduce me to the concept of using the “patient story” to reach the minds and (more importantly) hearts of professional audiences. I had been very impressed and motivated by listening to patients—but never had I experienced that kind of attention in a professional audience.
That year marked patients and families coming together to lay the foundations for our own stories becoming part of the greater, global movement to improve the quality of health services. The International Alliance of Patient Organizations and the World Health Organization’s Patient Safety Programme co-sponsored the first Patients for Patient Safety workshop, in conjunction with the aforementioned EU Patient Safety Summit.
At the workshop Sir Liam Donaldson and Don Berwick (both leaders in patient safety) met with 22 “patient champions” from around the globe (myself among them) and welcomed our push to formalise and establish a new culture (one that was “patient driven”): working with healthcare providers to reduce the harms inherent in medicine. Both affirmed that patients are the key to improved patient safety.
The “London Declaration” developed by the patient champions envisions patients participating in care with providers.
“In honour of those who have died, those left disabled, our loved ones today, and the world’s children yet to be born, we will strive for excellence, so that all involved in healthcare are as safe as possible as soon as possible.” (From the “London Declaration” by Patients for Patient Safety)
As patient champions, we looked for evidence of what oral history brings to medicine and found that little research had been done in this area. Some basic sociological and theoretical evidence existed, but there were no studies of any kind in any clinical settings. We found that studies looking into patient safety were mostly focused on the technical outcomes, while studies related to implementation and patient experience were rare.
In 2011, a national conference in Germany on clinical pathways and patient safety showed movement across the entire subject of patient safety in Germany. A national action platform had been established and the first academic teaching position on patient safety had been founded. Researchers were beginning to look for answers beyond the traditional professional concerns (for example, procedural and technical) in patient safety.
As Langer et al (2016) now amply demonstrate in their paper published in BMJ Quality and Safety, the idea of physicians working in a collaborative framework (“learning model”) with patients/family members has taken root in hospital based healthcare in Germany. Their qualitative research serves to identify the benefits of listening to each other and sharing a common concern in a structured project. They confirm that an educational paradigm that includes patients as teachers and collaborative learners with clinicians in patient safety is feasible and valued by clinicians, patients, and family members. They recommend its application in medical error disclosure and prevention training.
From my experience, engaging with patients in this way is a rewarding moment in a physician’s life. Patients bring new perspectives to the table and can become powerful allies in patient safety. However, for patients to take a more active role in continuous quality improvement efforts, patient representatives need to be included and engaged with on an ongoing and more substantial basis. The main obstacle to this happening is a global scarcity of public (and social) resources invested in nurturing “patient driven” organisations that could support this development. Patient organisations could well benefit from sharing some of the resources invested in patient safety. Patient representatives could be offered fellowships, training centres, and professional development—all of which would promote their partnership in patient safety.
Matthias Wienold, MD, mph, has been working with patient organisations since 1986. He is board treasurer for the International Alliance of Patients Organizations.
Competing interests: I have read and understood BMJ policy on declaration of interests and declare the following interests: None.