The Power of the Patient Voice – One Scientists Journey

by Kelly Smith, PhD

As a health services research, I often thought of the patients I worked with as a means to an end – as subjects in my research helping me to achieve greatness. As I worked with patients after open heart surgery, I learned so much from them, from their stories, and their shared experience of health and disease in a fractured healthcare system. I knew that the system needed help and found enlightenment in the field of patient safety.

As a newly minted doctor of philosophy, I embarked on a fellowship in patient safety research at the University of Illinois at Chicago. Here, I learned the power of the patient in a completely different way. They became my partners advocating for health systems change and transforming organizations into learning healthcare systems. I wanted to share a few of those opportunities here with you all.

First, we partnered with patients in developing a program to improve the health systems response to patient harm. This work led to the development of the Seven Pillars model for communication and resolution and in 2013, led to the development of the Communication and Optimal Resolution Program Educational Toolkit (CANDOR) in partnership with the Agency for Healthcare Research and Quality. Our patient partners continue to work with us to change the face of healthcare for patients and families harmed by medical error.

Second, in my first project coming to MedStar Health, our team partnered with patients to design the We Want to Know program – a program aimed at detecting, addressing, and learning from patient perceived breakdowns in care. Our patient partners wanted to “empower” over “educate” and advocated for active outreach rather than simply a passive campaign completely changing our approach! Now into our fourth year, MedStar has implemented WWTK across all ten of its hospitals helping to achieve the patient’s voice in healthcare transformation and improvement.

Third, our recent work, partnering with patients and primary care clinicians to develop and field test a Guide to Improving Patient Safety in Primary Care Settings by Engaging Patients and Families has yielded a new approach to translating evidence into practice called – Co-Production! It is through our process of co-production that we have created four interventions for the Agency for Healthcare Research and Quality to improve patient safety in primary care by engaging patients and families.

What has been most rewarding about these experiences is that:

  • Together, we have crafted a new normal for patient safety research.
  • Together, we have found our common language to discuss difficult and delicate issues.
  • Together, we have found our voice!

It is only together as health system leaders and patients as partners can build a safe, reliable, and supportive healthcare system to achieve the quadruple aim. I am so fortunate to work at MedStar Health that puts patients at the heart of its quality and safety journey.