Patient Involvement in Collaborative Quality Initiatives Offers Clinical Care Insight

By: Debbie Reinheimer

Physicians and surgeons are finding that some of the best information to help them improve clinical quality and outcomes may come straight from their patients. In fact, patients and their caregivers add their input by sharing their experiences with providers in six of 17 Blue Cross Collaborative Quality Initiatives (CQI).

CQIs bring together Michigan hospitals and physicians to address areas of medical and surgical care where there are high variability, high costs, and best practices are unknown. Participants contribute patient data to a shared registry, then review data and insights with each other several times a year at statewide collaborative wide meetings.

But merely looking at data doesn’t tell the whole story. Data doesn’t tell doctors how it feels to have a certain procedure, or which side effects are the most challenging for a patient or their caregiver to manage. So, when patients actively participate in these CQIs, physicians can incorporate their perspective into the development of new care processes and protocols.

The CQIs that involve patients have found it to be helpful in informing the direction of the CQI and ensuring a patient-centered approach to care-delivery. Patients have also found it equally rewarding to participate and share their experiences with the Michigan provider community.

For example, the Michigan Urological Surgery Improvement Collaborative has involved patient advocates for nearly eight years. Currently, there are 11 patient advocates who provide essential input and feedback based on their condition and the treatment that they have received over the years. The patient advocates provide the voice of the patient, ensure the needs of the patient remain front and center and serve as the moral compass for the collaborative. One example is where patient advocates provide feedback about active surveillance for favorable-risk prostate cancer. It’s critically important for patients to be actively engaged in shared decision making to determine which treatment option is best for their prostate cancer care, based on their own preferences, values, and goals.  Bill Crooks, a long-standing MUSIC patient advocate from western Michigan, said, “I feel respected, heard, and always get the feeling that my experiences as a prostate cancer patient living with side effects of surgery for more than 25 years are heard.”

The Michigan Oncology Quality Consortium launched the Patient and Caregiver Quality Oncology Council (POQC) in 2017. POQC members guide the selection of quality measures and new projects and provide feedback about their care experience from diagnosis through survivorship. The group makes sure patient input comes from a diverse representation of cancer disease, age, gender, race, ethnicity, and gender. One POQC member said their work with POQC has been rewarding and fulfilling. “We are not only asked for our feedback, feelings and ideas on all that MOQC does, but the message from leadership is respectful, consistent and very public about how important our input is.”

The Michigan Bariatric Surgery Collaborative includes nine former bariatric surgery patients whose goal is to instill the patient voice and perspective into the work of the collaborative. Members provide input during consortium meeting discussions and panels.  Patients share their experiences post-surgery in adapting to their new diet, keeping the weight off, and other challenges that they faced. “I am humbled to have been asked to provide my unique input into improving the surgical outcomes for all those who have yet to have the procedure.”

The Hospital Medicine Safety CQI invited a patient who had multiple complications tied to the use of the commonly used peripherally inserted central catheter (PICC) line.  The patient advocate spoke to the consortium of 60+ hospitals on why overutilization of PICC lines is not always in the best interest of the patient. “You could hear a pin drop as the patient advocate spoke.  All eyes were on the patient as she shared her stories of unnecessary complications brought on by overutilization of PICC lines,” said Tom Leyden, director of Value Partnerships. This patient also worked with HMS to develop a patient education pamphlet to help future patients understand the role of a PICC line, what other options are available, and precautions they can take.

Patients are increasingly bringing many benefits to the Blue Cross CQI program. Patient input gives providers important insight into the patient experience and how the clinical work they are doing in their specific CQI translates to outcomes for individual patients. This helps the CQI programs be patient centered as well as outcomes focused.