Kidney disease professionals are realizing that many issues within the kidney community can be solved by including patients’ and caregivers’ perspectives during all phases of product and treatment development cycles, including advancing treatment methods, drug development, and improving medical devices. They recognize the unique and critical role of patients—at all stages and with all types of kidney disease, and undergoing all forms of treatment—in determining what the next generation of renal therapies will look like. That was the message behind the session, “Patient-Centric Approaches to Kidney Disease Innovation,” at the American Society of Nephrology’s 2016 Kidney Week in Chicago.

Feedback from patients has already brought about improvements and changes to dialysis equipment and treatment protocols, such as adding laptops to dialysis treatments to record information, eliminating paper records, streamlining the machine set up process, and tweaking needle design and vein finders.

In the past, decisions about patient care were made by kidney professionals, medical organizations, and regulatory agencies. The patients were not asked or given choices about their care, they were told what their treatment would be. The results were poor outcomes, low quality care, high mortality rates, and frequent infections.

Eventually organizations realized that taking note of the patients’ and caregivers’ experiences could be helpful. They took note, but only picked the ideas they wanted to incorporate in their existing system. And little to no real change was made to improve patient care.

Incorporating the patient voice

Now the patient needs are upfront and kidney professionals are listening. Many organizations and clinics are implementing patient voice strategies to gather valuable information for future medical developments.

They recognize they have to change their approach to patients and caregivers to learn their wisdom. These professionals understand humility, that respect and trust are the foundation of patient centered care. To engage the patient, the doctors need to be respectful and responsive to the individual. The patient needs to feel empowered and know their input is valued and appreciated.

Many organizations, clinics, pharmaceutical and medical device companies are making an effort to work  with patients and caregivers by implementing strategic tools such as email surveys, clinical trials, focus groups, web-based portals, online questionnaires, and face to face meeting.

Patients and caregivers have been longing to be heard and understood by the medical team. They want empathy for their physical pain, daily struggles, necessary lifestyle changes, grief of losing their life as they knew it, emotional burdens, and for the immense stress put on them and their loved ones.

Patients and caregivers are encouraged to speak up about how kidney disease affects them and play a part in improving kidney disease care for others. Let your voice be heard and get involved in some of the patient engagement opportunities and let the medical professionals know what it is like to live with kidney disease.

Here are some of the organizations offering opportunities for patient engagement:

Patient Centered Outcomes Research Institute

Kidney Health Initiative

Nephcure

National Kidney Foundation

Home Dialysis Central 

American Association of Kidney Patients

You can also contact your local hospitals and transplant centers.