PREFER

Preference research from the patient perspective

2017-11-22

Diagnosed with Rheumatoid Arthritis (RA) ten years ago, An de Groef describes her journey from diagnosis, through treatment, to remission. Sharing her story on how RA affects her life, and outlook on the choices available to her at different stages of the disease.

An De Groef, postdoctoral researcher KU Leuven
An de Groef, Keynote speaker at PREFER annual meeting 2017

An de Groef, postdoctoral researcher at KU Leuven, gave an inspiring keynote presentation at the PREFER annual meeting in October 2017. As both an academic researcher and patient, she offered a unique perspective on what is important in preference research from the patient point of view. On behalf of patients, she said, “We want to tell our story. We want someone to listen to us. I had good medical outcomes, but I had some other issues that were hard to talk about.” She pointed out that it is important to remember that patients are overwhelmed after receiving diagnosis. They receive lots of information and ideas about what their diagnosis entails, but do not yet know what it will mean for them personally.

An de Groef received her own RA diagnosis at the age of 18. She described the differences between her own thoughts and reactions then compared to 10 years later, now in remission. She emphasised the fact that patients’ preferences will vary depending on the stage of the disease. A person with a recent diagnosis may not have the same preferences as someone in a more chronic and stable condition. In addition, patients in stable conditions might have a different view of what is normal in terms of fatigue or pain than someone with a recent diagnosis. This is something researchers need to remember when they design a preference study.

Another important point to consider is how and where you recruit patients, whether in the clinic, or through patient organisations. Moreover, depending on where you find the patients, and where they are in their own ‘disease journey’ and personal maturity, researchers also need to think about how they collect information on preferences. Whether individual interviews or focus groups are the better choice depends on whether patients are comfortable sharing.

An de Groef is a physiotherapist and postdoctoral researcher at KU Leuven, Belgium. In the early years of her RA diagnosis, An de Groef was a patient research partner in a study on the outcomes patients with early stages of RA prefer in terms of treatment. This was also the start of her own academic research career.

While being a research partner gave her a voice as a patient, it also created some confusion. Research is unknown territory for most patients, and An de Groef suggested patient partners should have one contact person that they trust. Based on her own experience, An de Groef pointed out that it could be difficult to differentiate roles when you sometimes meet your doctor as patient, and other times as a research partner. She suggested clinical researchers should work with their research partner to make sure roles are clear.  Perhaps brief job descriptions would help clarify roles and responsibilities, keeping expectations realistic on both sides.

Respect is also key to a successful collaboration between patients as research partners and clinical researchers. Patients might worry whether their contribution is valuable, and are sometimes are surprised when told they actually offer valuable input.

By Josepine Fernow

About patient input in the PREFER project

The PREFER consortium includes four patient organisation: the European Cancer Patients Coalition (ECPC), Muscular Dystrophy UK (MDUK), European Patients Forum (EPF), and International Alliance of Patients’ Organizations (IAPO). Together they form the PREFER Patient Advisory Group, coordinated by ECPC.

Patient Advisory Group members are directly involved in activities within all work packages of PREFER, sharing common expectations and ensuring that the methodologies identified correspond to the patient views, experiences and preferences. We also have a number of individual patients with rheumatoid arthritis on board through the clinical research partners at the University of Birmingham.