June 2024:

In recent decades, patient groups have become increasingly integrated into today’s healthcare landscape. Due to their unique understanding of patient needs, these groups have emerged as central figures in patient advocacy. They navigate the complexities of the healthcare system, liaise with various stakeholders, and ensure that patient input is considered in healthcare research.

To delve deeper into patient group experiences, PatientView is launching a new survey, ‘Patient groups in Healthcare’ designed with support from health professionals, patient groups, and the pharmaceutical industry.  This survey will ask patient groups to assess their contributions to healthcare systems, focussing on a central question:  Do healthcare systems see patient groups as essential stakeholders in the healthcare system in 2024?

The survey aims to achieve four objectives:

  1. Quantify the significance of patient organisations within healthcare systems
  2. Determine how patient organisations believe they are perceived by other healthcare stakeholders
  3. Map the activities of patient organisations
  4. Learn about the types of support that patient organisations need to fulfil their goals and improve patient outcomes.

In collaboration with industry partners, PatientView has developed six indicators within the survey to measure the importance of patient groups to healthcare systems:

Being a vital stakeholder in healthcare: Patient groups are asked whether they perceive themselves as essential to their healthcare systems.

Having an impact on healthcare:  Patient groups are asked whether they believe their organisations can influence various aspects of healthcare policymaking, provision, education, and education research.

Being respected and listened to: Patient groups are asked how other stakeholders perceive them in terms of whether they are essential to healthcare systems.

Working with other healthcare stakeholders: Patient groups are asked whether other healthcare stakeholders provide support in their organisation’s work.

The barriers patient groups face: Patient organisations are asked what barriers stand in the way of them fully participating in healthcare systems.

The services patient groups provide patients: Patient organisations are asked what services they provide patients and whether they carry out any specific policy activities.

For over twenty years, PatientView has collaborated with patient groups worldwide. We believe that the voices of patient groups are crucial and strive to ensure these voices are heard within the healthcare sector and perceived as important. This survey and its results will help the industry gain a deeper understanding of patient group experiences within the healthcare system and drive efforts to better support them.

To take part in this year’s survey which will be available in 22 languages, and share how whether in 2024, healthcare systems see patient groups as essential stakeholders, fill in the survey here.