14 Years' experiences of actions and consequences in Outcome Measurements in Rheumatology (OMERACT)", De Wit et al 2016, The Patient. Click here to view or download PDF.
Until recently, active patient participation in outcome research has been limited. In-depth interviews with new OMERACT patient participants has provided insights to help improve the collaboration between patients and researchers. Click here to view or download PDF.
The Patient Research Partners Group has produced an OMERACT Glossary which is useful not only for patients but for professional involved in OMERACT. Click here for the PDF.
Nobody knows how arthritis changes your life better than the people who have the condition. Recognising this, OMERACT has Patient Research Partners fully integrated into each stage of the OMERACT process. The involvement of patients has been based on:
The recognition that patient involvement strengthens outcomes research in rheumatology; the contribution of patient research partners to defining important outcome measures, such as minimum clinically important difference, recognizing domains of concern, such as sleep and fatigue, and ensuring feasibility of assessments, such as in the tolerability of MRI scanning times, has been manifest.
The face validity of outcomes development which clearly incorporates the patient perspective; regulatory authorities (e.g. US FDA) require such involvement.
An intention to ground theoretical discusses in the "lived experience" of arthritis and, in concepts, which can be readily communicated to patients to help with therapeutic decision-making. Parallel patient reported outcomes measures related to the personal life impact of diseases and their treatment, and systems to help patients integrate evidence into personal health care decisions have emerged as an important area of development.
Click here to view article in The Rheumatologist.
In this thesis, I have studied a new role of patients with a rheumatic condition in the context of scientific research. This new role is different from the traditional patient role as passive subject of research. The first chapter describes how patients can perform this new role in different ways of which I have examined four: The patient role as a research partner, as a participant at a scientific conference, as a scientific committee member and as a patient researcher.
What these roles have in common is the equality between patients and researchers when collaborating in research practices. Establishing such relationships is not easy. It is the challengeto create openness for the everyday perspective of patients in a power-free dialogue. Making spacefor patients’ experiential knowledge is important because the patient perspective is often lost in the current system of research. That has to do with the dominant medical discourse in which curing the disease and treatment are central instead of the person with the disease. The focus on medical aspects of the disease means that other aspects are excluded. These are often existential, social and societal questions that arise when people are confronted with a (chronic) disease. These questions go beyond 'does a cure exist' or 'is there a therapy’. These are questions that are important from the perspective of patients, but they often disappear inadvertently and unintentionally from the sight of researchers. I call them 'slow questions' because the solution is often not obvious and scientific research takes time.
Patient participation offers an opportunity to restore the balance between the focus of the research system and the experiences of patients. If patients become involved as equal partners in formulating research questions and are encouraged to think about the conduct of research, important themes of patients and patient organizations will be added to the research agenda. Especially in modern, democratic societies many experiments with patient participation are ongoing. Here participation is seen as a democratic and fundamental right of patients. On the basis of four case studies, I have tried to answer the question: What is the added value of patient participation and what does it take to achieve that?
The case studies take place at four levels within rheumatology research: The Dutch network of patient research partners (Dutch Arthritis Association), the European recommendations for patient participation (EULAR), Outcome measures in rheumatology (OMERACT) and reflections on the role as patient researcher.
Click here to view or download PDF.