OMERACT Patient Research Partner Network

Publications

Stepwise development of PRP partnerships.

 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. 

Patients' Expectations and Experiences at the OMERACT 2010 Conference

 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.
 

OMERACT Glossary

  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.  

Patients Add Power to Research Initiatives

 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.

 

Patient Participation in Rheumatology: A Four Level Responsive Evaluation

  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.  

Further Publications

  1. de Wit M, Kirwan JR, Tugwell P, Beaton D, Boers M, Brooks P, Collins S, Conaghan PG, D'Agostino MA, Hofstetter C, Hughes R, Leong A, Lyddiatt A, March L, May J, Montie P, Richards P, Simon LS, Singh JA, Strand V, Voshaar M, Bingham CO  3rd, Gossec L. Successful Stepwise Development of Patient Research Partnership: 14 Years' Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT). Patient. 2017 Apr;10(2):141-152. doi: 10.1007/s40271-016-0198-4. PubMed PMID: 27704486; PubMed Central PMCID: PMC5362656.   
  2. Cheung PP, de Wit M, Bingham CO 3rd, Kirwan JR, Leong A, March LM, Montie P, Scholte-Voshaar M, Gossec L. Recommendations for the Involvement of Patient Research Partners (PRP) in OMERACT Working Groups. A Report from the OMERACT 2014 Working Group on PRP. J Rheumatol. 2016 Jan;43(1):187-93. doi: 10.3899/jrheum.141011. Epub 2015 Apr 15. Review. PubMed PMID: 25877496.   
  3. Kirwan JR, Bartlett SJ, Beaton DE, Boers M, Bosworth A, Brooks PM, Choy E, de  Wit M, Guillemin F, Hewlett S, Kvien TK, Landewé RB, Leong AL, Lyddiatt A, March  L, May J, Montie PL, Nikaï E, Richards P, Voshaar MM, Smeets W, Strand V, Tugwell P, Gossec L. Updating the OMERACT filter: implications for patient-reported outcomes. J Rheumatol. 2014 May;41(5):1011-5. doi: 10.3899/jrheum.131312. Epub 2014 Mar 1. PubMed PMID: 24584919.   
  4. Kirwan JR, de Wit MP, Bingham CO 3rd, Leong A, Richards P, Tugwell P, Voshaar M, Gossec L; Outcome Measures in Rheumatology Executive Committee. Commentary: Patients as Partners: Building on the Experience of Outcome Measures in Rheumatology. Arthritis Rheumatol. 2016 Jun;68(6):1334-6. doi: 10.1002/art.39678. PubMed PMID: 26991682.   
  5. de Wit MP, Abma TA, Koelewijn-van Loon MS, Collins S, Kirwan J. What has been the effect on trial outcome assessments of a decade of patient participation in OMERACT? J Rheumatol. 2014 Jan;41(1):177-84. doi: 10.3899/jrheum.130816. Epub 2013 Oct 15. PubMed PMID: 24128777.   de Wit M, Abma T, Koelewijn-Van Loon M, Collins S, Kirwan J. Facilitating and inhibiting factors for long-term involvement of patients at outcome conferences--lessons learnt from a decade of collaboration in OMERACT: a qualitative study. BMJ Open. 2013 Aug 23;3(8):e003311. doi: 10.1136/bmjopen-2013-003311. PubMed PMID: 23975104; PubMed Central PMCID: PMC3753501.   
  6. de Wit MP, Koelewijn-van Loon MS, Collins S, Abma TA, Kirwan J. "If i wasn't  this robust": patients' expectations and experiences at the Outcome Measures in Rheumatology Conference 2010. Patient. 2013;6(3):179-87. doi: 10.1007/s40271-013-0017-0. PubMed PMID: 23736943.   
  7. de Wit M, Abma T, Koelewijn-van Loon M, Collins S, Kirwan J. Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences. BMJ Open. 2013 May 9;3(5). pii: e002241. doi: 10.1136/bmjopen-2012-002241. PubMed PMID: 23667160; PubMed Central PMCID: PMC3651970.   
  8. Kirwan JR, Ahlmén M, de Wit M, Heiberg T, Hehir M, Hewlett S, Katz PP, Minnock P, Quest EM, Richards P. Progress since OMERACT 6 on including patient perspective in rheumatoid arthritis outcome assessment. J Rheumatol. 2005 Nov;32(11):2246-9. PubMed PMID: 16265711.