OMERACT Patient Research Partner Network

Resources for patient research partners enhancing participation in OMERACT

1. PRACTICAL ISSUES 

One day arrival in advance of start conference 

Patient pack 

Buddy system 

OMERACT Glossary 

Webinars 


2. AT THE OMERACT CONFERENCE 

Time pressure 

Workgroup participation 

PRP group participation 

Communication during conference, DO’s/DON’Ts  


3. AFTER OMERACT, IS THERE LIFE? 

Contact working group 

Dissemination to national patient organizations   


PRACTICAL ISSUES 

1.1 ONE DAY ARRIVAL IN ADVANCE OF START CONFERENCE   

  THE OMERACT conference is comprised of intensive sessions that occur throughout the day and into the evening between group meals. For those of us who are affected by a chronic condition(s), just traveling to the site of the OMERACT conference and becoming comfortable with the conference logistics and meeting times can take its toll on us both physically and mentally. Recognising this fact, the OMERACT Executive Committee supports our need to arrive one day in advance in order to overcome jet-lag and to prepareg ourselves for the upcoming intensive days.  

1.2 PATIENT PACK 


1.3 BUDDY SYSTEM   

 Attending every OMERACT conference are new PRPs as well as patients that have been previously participated. Who is invited depends on the Working Group invited to present at the biannual conference . Due to the sheer number of Working Groups, it is not possible for all to participate every time. To enhance the process of participating to our fullest ability, we have developed a buddy-system; every new PRPreceives in advance of the conference the details of an experienced PRP who is also attending. This “buddy” will contact you before the conference soo any questions can be answered, before, during and after the meetings. This is also to make it easier for you to get used to the concept and process of OMERACT 

1.4 OMERACT GLOSSARY of Terms

  Two Patient Research Partners, Maarten de Wit and Pam Richards, have  compiled a “glossery” to help patients better understand terms and definitions. This is a booklet where all abbriaviations and medical terms (that came up during the OMERACT conferences) are listed, defined and explained. This is an ongoing effort initiated by and for patients., Since there are always terms that are not familiar, the Glossary is updated every year. We have discovered that the Glossary is helpful to other researchers and Fellows (doctoral students in training. The Glossery is provided to all PRPs as a part of the patient pack if you are attending an OMERACT conference. Anyone may also download the OMERACT Glossary here

1.5 WEBINARS

  Several webinars are available, specifically for PRPs to become acquinted with the methodology and the concept of being part of OMERACT research. An initial webinar has been previously recorded to  provide a general introduction to the new methodology of OMERACT to develop a core outcome domain set. This webinar can serve as a gentle reminder of the OMERACT process, so please have a look at:   

  https://www.dropbox.com/s/d2kkywl0571lm2l/2017-05-02%2016.03%20OMERACT%20Educational%20Webinars%20%283am%20Monday%20May%201%29%283am%20_%2010am%20Tuesday%20May%202nd%29%28Thursday%20June%201%2010am%29%20%28.mp4?dl=0 


  In the next webinar we will focus on the methodology of developing a core instrument measurement set. The purpose of this webinar is to explain what the OMERACT filter 2.1 is and how it helps us to select the right measurement instruments. Important concepts that will be explained are the three key elements of the OMERACT filter (truth, discrimination and feasibility), OFISA (OMERACT Instrument Selection Algorithm) and the role of PRPs in developing a core instrument set. Participation is free and on a voluntary basis. After the meeting we will share a link among all interested PRPs.   


  2.1 TIME PRESSURE 

It is important for you, as it is for your fellow workgroupmembers, that we are in good condition to participate to the fullest of our abilities. The first time that you will visit the Omeract conference, it can be quite overwhelming. You are expected to participate in the meetings of your workgroup, as well in meetings that you will be assigned to. Please, take your rest in between, and take care of your own energy level. 

2.2 WORKGROUP PARTICIPATION 

You are part of a (or more) workinggroup(s). That means that you are already involved in a group, (such as the FLARE group or the CONTEXTUAL FACTORS group). The group is supposed to work closely together, and you are part because you have the unique patient perspective, which has been proven to be valuable in research. This perspective is appreciated, and you are (should beJ) an equal appreciated member of this group.  

2.3 PRP GROUP PARTICIPATION/SESSIONS 

During Omeract, a special session every day will be held to summarize important topics, to introduce the sessions of the day and to listen to your experiences. These sessions are very helpful and will contribute to good participation. Therefore they are obliged.   

2.4 COMMUNICATION DURING CONFERENCE, DO’S AND DON’Ts 

Respect all expertises that person bring to the conference; Fellows, Researchers, Patients, they all have different backgrounds but are participating for the same reason. To develop outcome measurements for clinical trials in order to make comparison and treatment worldwide better. As for the communication, respect and patience are helpful to understand each other. As a patient research partner, you can always ask for clarification of matters you do not understand. All patient perspective issues that are relevant for the research of the topic are important. Sometimes it is neccessary to share a helicopterview (you will be asked if you can represent the patient perspective in a general way) and sometimes during workshop/meetings, you may feel to bring in your own perspective. This information should always be kept confidential (in reporting back in plenary sessions).   

AFTER OMERACT, IS THERE LIFE? 

1.1 CONTACT WORKING GROUP 

When you are part of a workgroup, then you are not supposed to join only the Omeract conference, but to participate and contribute mainly before and after the meeting. So, for most patient research partners, it is even not to be expected to receive an invitation for the Omeract conference. Only a few people of each selected workinggroups are invited. But each workgroup needs optimal input, therefore it is essential that you will participate from the beginning to the end of the topic. That means that you need to be informed. If that does not happen, please contact your workgroupleader. 

1.2 DISSEMINATION TO NATIONAL PATIENT ORGANISATIONS 

When your workgroup has finished the research, most results are finding a way into a scientific publication. However, these results are also important to the patients. It can be your task to disseminate these results in your country by informing your national patient organisation about the conducted research and its findings. For example, most organisations have patient magazines with articles written in lay language. That is one of the ways you can use to spread the outcomes.