OMERACT Patient Research Partner Network

Frequently Asked Questions

1. Can I talk to another OMERACT PRP before I apply for membership of the PRP network?

Please email your contact details (e.g. Skype address), your location and a brief outline of your experience (e.g. type of rheumatic condition) and we will endeavour to link you with a patient research partner who is in a similar time zone.

2. Can I sponsor the PRP leadership?

http://omeractprpnetwork.org/sponsorship 

Sponsorship letter

OMERACT is committed to supporting the full participation of its PRPs in outcomes research throughout the year. PRPs who are active members of Working Groups and SIGs (that are scheduled to participate in the biennial OMERACT conferences) are supported financially by the OMERACT Executive Committee through organisational fundraising. While health professionals have predominately been responsible for seeking funds to support PRPs, there is a growing trend for all stakeholders to participate in securing critical funding for PRPs and Fellows. For example, PRPs in the Rheumatoid Arthritis Flare Working Group appealed and secured funds that assisted the Working Group to fund additional PRPs to attend an OMERACT conference. If you have contacts with foundations,, individuals, or companies that may be interested in supporting Patient Research Partner activities and/or research, please contact admin@omeract.org.


OMERACT CONFERENCE RELATED FAQs


1. Who attends OMERACT?

a. Many people around the world are part of the OMERACT network, some of whom may never attend an OMERACT conference. During a conference meeting the number of participants is kept to approximately 200 delegates who are:

i. Patient Research Partners (PRPs) who work side by side with researchers in their local area to ensure their perspective as people living with a health condition is included in the OMERACT research activities. There are approximately 20 PRP delegates from around the world, representing the patients’ perspective of the rheumatologic diseases included in each conference programme. 

ii. Fellows are junior researchers; many are undertaking a PhD. Fellows who are able to raise sufficient funds attend OMERACT when their project topic has been accepted for inclusion in the conference programme. 

iii. Clinicians with a special interest in research and developing outcome measures (in particular patient reported outcomes), are keen to follow the OMERACT guidelines * when developing a new core outcome set for clinical research. 

1. * The OMERACT Filter is recognised internationally as a way to standardize the development of treatment measures which are robust, reliable and can more easily be used to compare the effectiveness different treatments. 

iv. Scientists and Pharma researchers are essential participants in OMERACT, without whom many of the significant advances in treatments would not be available.


2. If I attend a conference will I have to contribute to sessions that are not about my disease?

PRPs, as with all delegates, participate in every aspect of the conference programme. Conference sessions that are not dealing with their particular disease still require the perspective of people who live with a long-term condition. As PRPs make up 10% of the delegates their involvement in other diseases than their own is important.


3. Why is the conference every two years instead of annually like most other medical conferences?

Most medical conferences are essentially educational where delegates listen and learn about the results of completed research. OMERACT primarily a working conference where researchers present and discuss their on-going, incomplete research and try to achieve consensus about core outcome sets for clinical research. All OMERACT delegates are equally involved discussing and sharing their views about each project brought to the conference. Following the conference each research group uses the combined knowledge of the conference delegates to inform the direction of the on-going research. It takes many months and often many years to carry out excellent research. Having a biennual conference allows time for researchers to conduct sufficient work to bring the data to OMERACT for discussion and possible conclusion.


4. Why does it rotate?

OMERACT is made up of people from around the world. It is an intense and time-consuming conference meeting held alternately in the northern and southern hemisphere. Rotating continents shares some of the burden of travel, time difference and expense between participants. If the location was always in one hemisphere the physical (apart from financial) burden of travelling to the ‘other side of the world and time zone’ could preclude the participation of some (patient) delegates.


5. When I am part of a Working Group do I automatically get invited to the OMERACT meeting?

Like many fellows and researchers who contribute to a Working Group, not everyone attends a meeting. It is however essential that the research project Working Group has as much input as possible from people who experience the impact of their condition. Their experiential knowledge is invaluable and such input is not restricted to the small number of patients who attend a conference.