Patient Engagement as a Step Forward

Did you ever wonder what Patient Engagement means and why it is important?

Celeste Castillo Lee is a woman who battled with End Stage Kidney Disease for over 30 years. She developed vasculitis when she was 17 and it led to kidney failure, leading her to undergo dialysis and eventually a kidney transplant. Throughout her life, Celeste was very active in patient engagement: “my work on patient engagement gave me an absolute meaning and value to my life […]. I met incredible people on my journey and I feel like we’ve made a difference” said Celeste in one of her last interviews with Dr. Falk.

Patient engagement is a term that is becoming more and more prominent in health care systems.  What is the objective of patient engagement? To Celeste, patient engagement means creating a partnership between patients, doctors, and families; a partnership where patients are educated about their disease and doctors are educated about their patients’ needs with the aim to decide together the best possible treatment and reach the best possible health outcome.

Engaged patients are crucial in driving better patient care and improving health outcomes. Patients are usually the most interested party in the positive outcome for their health. Therefore, patients who are engaged in their healthcare decision-making process can have an advantage in recovery, as they have a good understanding of the treatment and recovery processes. Taking part in making health-related decision can be very empowering, especially if decisions are backed up by knowledge and patients have an opportunity for an informed discussion with their healthcare provider.

Patient engagement is not only personal. To Celeste, it also meant giving and public engagement. For many year, Celeste was actively involved in the Kidney Health Initiative (KHI) – an initiative dedicated to improving patient safety and promoting the development of best possible therapies for diseases affecting the kidneys. She was a founder and the leader of the Patient Family and Partnership Council, a group established in 2015 to provide guidance to KHI about how to activate and include patients, families and caregivers in the organization’s activities.

Public patient engagement is fundamental to improving research, advancing therapies and increasing healthcare funding. Celeste worked for years to raise the profile of kidney patients in the United States and speak up for them. She left an invaluable and enduring legacy.

A passionate follower of Celeste’s work and very active advocate of patient engagement is Kevin Fowler, better known on-line as @gratefull080504, a Twitter handle he created to commemorate the date he received a kidney transplant, after suffering from Polycystic Kidney Disease for many years. He had the honor of working together with Celeste on ensuring that the patient voice was heard at a political level and advocated for increased funding for kidney disease research and transplantation. In October 2017, Kevin wrote a paper “Innovation in Chronic Kidney Disease: The Need for the Patient Voice”. The paper highlights the importance of public patient engagement and how effective it is in improving kidney patients’ access to care.
Chronic Kidney Disease (CKD) has a devastating impact on the patients worldwide. In the United States alone there are 26 million people with CKD and only 10% of them are aware of their disease. Unfortunately, the need for higher awareness and health education is a very apparent and poignant issue.

The kidney community can learn a lot from oncology and HIV/AIDS patient communities that are very strong in established patient voice that is being heard. In his October 2017 article, Kevin has suggested three main recommendations to reactivate the patient voice in the kidney community: 1) elevation of patient expectations, 2) upstream vs downstream policies, and 3) patient centered care. While the concept of patient engagement and its introduction to the healthcare system is relatively new, the benefits of such interactive approach are clear and deserve more attention from the public, as well as decision-making bodies.

If you have more questions about patient engagement, feel free to contact Kevin on Twitter or visit the website of Institute for Patient- And Family-Centered Care

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