!test EUPATIConnect – FAQ

EUPATIConnect is a fee-for-service matchmaking platform that connects EUPATI Patients Experts (EUPATI Fellows & Open Classroom learners) and in some instances, lay patients with researchers looking to involve patients in various projects (e.g. protocol review, focus groups, speaking opportunities, patient advisory boards, ethical committees, regulatory processes). EUPATIConnect does not provide matchmaking for participation in clinical trials. The purpose is to facilitate matchmaking on both sides. By being part of the platform, EUPATI Patient Experts will be able to indicate their availability to participate in various projects, and on the other hand, researchers will be able to submit their requests to find patient partners for their projects. The EUPATI Secretariat, via EUPATIConnect, will connect both parties.

The main reason for creating EUPATIConnect is to improve the ease with which both researchers and EUPATI Patient Experts can collaborate on futer projects.

• Researchers: EUPATI receives many requests from researchers to involve patients in their projects.
• EUPATI Patient Experts: EUPATI Patient Experts wish to put their training, knowledge, and skills to use.
• EUPATI: In the past, the process of connecting EUPATI Patient Experts and researchers was a very manual process, dependent on the EUPATI Secretariat’s internal knowledge of which Patient Experts may best suit the project and its own internal database – e.g. this may have meant that a call for a project was sent to all EUPATI Patient Experts, even when only relevant to a specific disease area.

Going forward, we wish to make process smoother, quicker, and more efficient for all involved. Please see the ‘Why EUPATIConnect?‘ benefits section for additional benefits of using EUPATIConnect.

As with any new tool, what we would like to do and what is practical to deliver can sometimes differ! Therefore, the development of EUPATI Connect will be split into two phases.

Phase 1 (Currently Available):
The first phase provides an internal platform with a matching algorithm to connect both EUPATI Patient Experts and researchers. The EUPATI Secretariat provides the matching service and only the EUPATI Secretariat has access to the profiles and projects.

• Researchers will be able to submit their project requests online.
• EUPATI Patient Experts will be able to log in to view and edit their profiles.
• EUPATIConnect will work as an internal tool that will facilitate the automatic matching of EUPATI Patient Experts and researchers.
• The EUPATI Secretariat will remain involved to facilitate the matchmaking request.

Phase 2 (Launch Date to be Determined):
In the future, we may move towards more of a self-service model i.e. move from offering a service to creating an external platform for both parties to interact. In this instance, EUPATI would not be involved in the matching process but would only provide the platform. In this phase, we may also look to expand the EUPATIConnect tool facilities – for example, enabling patients to search for available projects, etc. Patient Experts are included in the EUPATIConnect database.

For EUPATI Patient Experts:

• All EUPATI Patient Experts are included in the EUPATIConnect database. However, EUPATI Patient Experts have the right to ask for their profile to be deleted if they do not wish to be included on the database by contacting the EUPATI Secretariat on connect@eupati.eu
• EUPATI Patient Experts can log in to the portal and edit their profiles.
• All personal data is handled according to the GDPR aligned privacy policy of EUPATI.
• Only the individual EUPATI Patient Expert and the EUPATI Secretariat have access to their profile.
• The profile is not available to other users or to researchers.
• Once registered with EUPATIConnect, EUPATI Patient Experts will be eligible to be contacted for research projects of relevance.
• Requests will be clarified upfront whether they are paid or voluntary projects. Therefore, EUPATI Patient Experts will be able to accept or decline projects accordingly.

For Researchers:

• Researchers can submit requests to involve EUPATI Patient Experts in their research project via EUPATIConnect.
• The EUPATI Secretariat via the EUPATIConnect tool connects researchers and EUPATI Patient Experts.
• Researchers will be able to receive a basic matchmaking service or a tailor-made matchmaking service (with additional support from the EUPATI Secretariat) depending on their preference.
• If for any reason EUPATIConnect does not provide a successful match, it is also possible for EUPATI to ask our EUPATI Patient Experts and reach out to their own networks to determine if it is possible to find a suitable person or a lay patient, depending on the task.
• The level of support that researchers wish to receive from the EUPATI Secretariat in terms of the matchmaking service will be agreed upon between EUPATI and the researchers in question in advance and based on the package chosen.

EUPATIConnect will operate as a fee-for-service tool. There will be no cost for EUPATI Patient Experts or initially EUPATI partner academic organizations to use EUPATIConnect. There will be a charge for industry partners and external organizations depending on the level of support required.

EUPATIConnect fees will be used to cover the administration costs of running and hosting EUPATIConnect as well as providing the EUPATI Secretariat support for this service.

Our goal is to match research requests with the appropriate EUPATI Patient Expert within the earliest possible timeframe. Depending on the nature of the request and the package selected (basic v tailor-made v custom) these timelines may vary. Our request form also asks researchers to include a deadline for their expected response.

• For a basic search, we would expect that researchers would receive a response within one week from when a request is sent. This should provide sufficient time for the EUPATI Patient Experts to respond.
• For the tailor-made requests, the response time will depend on the nature of the request and the level of Secretariat support required (e.g. CV review, follow-up contact with patients, etc.). Typical responses times for this type of request will be agreed upon as part of the initial scoping discussion of the request, but typically may be in the region of 1-3 weeks.

Over 90% of our requests have been successfully matched. However, please note that EUPATI cannot guarantee a successful matching result. In the case of no match (for basic option), no fee will be charged. For tailor-made option, a fee will be charged even in case of no matches to cover the use of the EUPATIConnect tool along with the EUPATI Secretariat’s time required to handle the request.

With a 90%+ success rate, our goal is always to find the best possible match. However, each matchmaking search will always be a unique process, depending on a variety of factors. On this basis, we have created three tailor-made plans, depending on the needs of the researcher and the level of involvement required from the EUPATI Secretariat to support the request. For our basic plan, EUPATI Patient Experts will be put in contact with researchers directly outlining their interest and availability. For our tailor-made and custom plans, the EUPATI Secretariat can provide additional support to confirm the interest and availability of our EUPATI Patient Experts. Please review our pricing options and select the right plan and level of support that you require. To assist with the planning, information about the different disease areas covered by the EUPATI Patient Experts is available on the website.

Our goal is always to provide the best possible match and our database is growing all the time. With new EUPATI Patient Experts being continually added to the patient expert pool, we are constantly improving the chance of a successful match. Nevertheless, as matchmaking is a unique process and depends on a variety of factors, there will always be a minority of occasions when a successful match is not possible. What we typically see is that the more detailed and specific the information provided by the initial research request, the higher the chance of a match. Historically, some reasons why a match may be unsuccessful may include:

• The nature of the request is very specific and targets a narrow population that might not be well represented among our EUPATI Patient Expert pool.
• The request may not offer financial compensation.
• The request may involve a heavy workload or
• The requested EUPATI Patient Expert is already committed elsewhere.

Under our basic package, it may not be as clear why there was not a successful match, as EUPATI Patient Experts will contact the researcher directly. However, with our tailor-made package, as EUPATI will be in direct contact with the EUPATI Patient Experts, feedback should be feasible. As with everything that we do, continuous improvement is our goal. Therefore, as part of our process of improvement, we will be undertaking an ongoing evaluation of our service in order to facilitate the continuous enhancement of EUPATIConnect.

EUPATI has worked in collaboration with FindMeCure Foundation to develop and build the EUPATIConnect matchmaking tool. FindMeCure has provided the technical expertise to facilitate the creation of EUPATIConnect.