This presentation at the European Association of Urology (EAU) Annual Meeting 2022 earlier this week discussed the value of patient-centred care. Dr Jewett, a urologist from the University of Toronto, Canada, has seen a huge transformation in the use of the patient voice to deliver high quality care over the past 40 years. Dr Jewett is a board director of the International Kidney Cancer Coalition (IKCC) and an advocate for patient engagement.

Various studies have produced high level evidence to support the use of patient engagement and decision-making. A study published in 2017 in the Journal of the American Medical Association included over 700 American patients with metastatic disease. Half of the patients had access to a reporting system that allowed earlier therapy change. There was an overall survival benefit of about 10% compared to those who had standard care. This study showed that this engagement strategy could be considered a ‘blockbuster’ treatment and clinicians should ‘prescribe’ this for their patients.

The objectives of Dr Jewett’s presentations were to:

  1. Understand what patient engagement means and how it applies to different health care systems and cultures
  2. Review the known impacts in terms of improved quality of life, reduced legal actions, less hospital visits and calls
  3. Review the impact of patient engagement on cancer survival
  4. Develop strategies to encourage patients to take part in engagement activities, including advocacy groups and patient education programmes. Encourage patient-centred care by multidisciplinary teams, provide timely access for side effect reporting, and the use of social media and other communication tools.

What is patient engagement? Patient engagement is encouraging patients to manage their own health care. This includes increasing awareness and taking better care of their own disease or condition.

Dr Jewett presented a summary of the activities of the IKCC, including the annual meeting to share best practices, World Kidney Cancer Day, and participation on guideline committees for kidney cancer. It is becoming more popular to recognise the patient voice in kidney cancer treatment guidelines, such as the EAU kidney cancer guidelines. Dr Jewett also talked about the IKCC clinical trial infographics for patients and clinicians, and the shared decision aids.

Dr Jewett summarised by saying that there is now a little more understanding of what patient engagement means and what its impact is, including on cancer survival. Patients should be encouraged to take part in engagement activities. The hope is that one day this will be commonplace in health care and it will be a cheaper way of improving survival.