Patient involvement

Introduction

Patient involvement in clinical practice and research is an emerging requirement in healthcare. Patient involvement has two different aims: (1) Empower patients to contribute actively to their treatment and care or (2) collaborate with patients or public stakeholders in developing new initiatives in the healthcare system or clinical trials.

 

  1. Patient involvement in clinical practice:

  • Patient-reported outcomes (PROs) ensure patients’ perspectives on symptoms, quality of life, and treatment outcomes are systematically incorporated into treatment and care.
  • Shared Decision-Making (SDM) is a collaborative approach between patients and healthcare professionals (HCPs). It enables them to make shared decisions, aligning treatment and care with patient's values and preferences.

  1. Patient and Public Involvement (PPI):

  • Organisational patient involvement refers to integrating patient perspectives at the systemic level within the healthcare system. This includes involving patients in governance, policy-making, and quality improvement initiatives to ensure services align with patient/public needs and preferences.
  • Involving patients and the public in research design, implementation, and dissemination enhances the relevance and impact of clinical trials. Furthermore, PPI can help identify potential issues in trial design or structure that may hinder recruitment or retention, thereby improving the feasibility and success of the study.


Background

Patient-reported outcomes (PRO) are essential for ensuring patients' best possible treatment, care, and quality of life during and after radiotherapy. The interactive use of PRO data, including information on symptoms, functional capacity, and quality of life, helps to focus on acute- and long-term toxicity. Further research into PRO will enhance the understanding of the frequency, severity, and progression of acute and late toxicity from radiotherapy, providing crucial insights for patient information and developing future interventions to improve cancer patients' quality of life.


Shared decision-making (SDM) involves exchanging information. Healthcare professionals (HCPs) provide evidence-based details about treatment options and outcomes while patients communicate their values and preferences. The process concludes with a collaboratively developed plan tailored to the patient's needs and preferences. In cancer care, the systematic adoption of SDM remains limited, with insufficient evidence supporting its consistent implementation. Addressing this gap requires raising awareness and knowledge among HCPs and patients alongside initiatives such as skills training, practical tools, and structured interventions to integrate SDM into routine practice.

Patient and public involvement (PPI) holds significant potential to enhance the relevance and quality of healthcare services and research. However, more consensus must be reached on the intended purpose and measurable impact. Current evidence needs more strength, particularly regarding consistent reporting of PPI definitions, activities and outcomes. Strengthening the evidence base through systematic research is essential to establish clear guidelines and evaluation methods. This will ensure that the full benefits of PPI are understood and effectively integrated into healthcare services and research processes.

 

Projects

The list of projects needs to be completed. If you are working on a project of national relevance/interest within the scope of patient involvement, please contact mail@straaleterapi.dk.

  • Patient-reported outcomes (PROs):
    • AYA BEAM - quality of life in young adults with cancer during and after radiation therapy (to start end of 2025)
  • Shared Decision-Making (SDM):
    • Development and feasibility testing of a clinical trial patient decision aid
  • Patient and Public Involvement (PPI):

 

WP leader

Anne Wilhøft Kristensen, Clinical Nurse Specialist, PhD student, Danish Centre for Particle Therapy, annkrs@rm.dk



Other key people

Patient involvement is a new WP in DCCC RT and is open to members. Don't hesitate to contact mail@straaleterapi.dk if you are interested in joining this group and contributing to the development and research of nationally based patient-involving initiatives within radiation therapy.