Rare Disease Peer Mentoring Programme 2016/17

Transcription

1 Rare Disease Peer Mentoring Programme 2016/17

2 Introduction to Findacure Findacure is a UK charity that is building the rare disease community to drive research and develop treatments. We work to: Empower patient groups to build their patient communities, develop as a charity, and drive treatment research and development. We organise training workshops, a peer mentoring programme, and an online resources portal. We believe that patient groups have a crucial role to play in representing patient needs and the patient voice in research. Promote collaboration between rare disease stakeholders to facilitate treatment development for all. We run networking events and conferences, as well as a medical student essay competition, to raise awareness of the fundamental importance of rare diseases. We also are setting up our own drug repurposing programme using innovative social financing. In undertaking this work, Findacure follows in the footsteps of William Bateson, a father of modern genetics, who reminded us to treasure our exceptions.

3 Background to the Mentoring Programme Findacure launched the Rare Disease Peer Mentoring Programme pilot in November 2014, with the aim to: build the capacity of patient groups and communities; improve their patient support services and/or increase their involvement in research; and create a more unified and collaborative rare disease community. Sixteen patient advocates and patient groups were recruited to the pilot, along with fifteen expert mentors. Of the sixteen mentees, five had been existing for less than a year and five had been operating for less than four years. Mentors originated from a variety of backgrounds, from patient groups, healthcare consultancies, health communication consultancies, biotechs, and pharmaceutical companies. Over the course of 2015, these pairs achieved a great deal. Some key achievements were: four mentees legally registered as charities; four mentees secured new sources of funding; one mentee set up a new helpline for patients; two mentees developed new clinical guidelines for their conditions; two mentees became directly involved with clinical trials being conducted into their conditions. Following overwhelmingly positive feedback from participants (and constructive comments for improvements), the peer mentoring programme is being opened up to a new cohort of mentees and mentors. Scope of the peer mentoring programme There are many different definitions of mentoring. The one we encourage through this programme is: Mentoring is a learning and development partnership between a professional with in-depth experience and knowledge in a specific area and a protégé seeking learning and coaching in the same area. This programme is aimed at mentees who are looking to develop their rare disease charitable organisations. Consequently, the focus of the mentoring should be on the organisation and the mentee s ability to achieve their goals. The holistic development of the mentee is outside the scope of this mentoring programme.

4 Format of mentoring programme Applications are open to all prospective mentees and mentors until 21 st August. Applications will be accepted on the basis of suitability to the aims of the programme and compatibility with the needs/skills of mentees/mentors. All eligible participants will be invited to the matching day on 16 th September, where participants will be provided with a shortlist of potential partners for the programme. Participants will then be able to feedback on their perceived rapport and rank their most favoured pairs. Final matching decisions will be based on this feedback and the compatibility of applications. Mentoring pairs will then be free to arrange themselves and set definite objectives for the year. Findacure will check in on a quarterly basis to monitor progress and ensure both the mentors and mentees are satisfied with the pairing. Additional support will be provided throughout the year in the form of Findacure s training workshops and webinars, which participants are encouraged to attend. These additional events serve as a means for nonpaired participants to meet and share learnings. One participant in the 2014 pilot commented on this aspect: One of the most interesting and useful parts of the Findacure events series this year has been the discussions had before and after events with people on the mentor programme. Findacure events facilitate the relationships that have been built by the programme. At the end of the year, all participants will be brought together in a final reception on 29 th September 2017 to celebrate progress. Pairs will be invited the present their key achievements and key learnings from the year. The opportunity will be given to feedback on the programme and make suggestions for improvements.

5 Responsibilities of participants If you are accepted onto the peer mentoring programme, you will be required to meet the following expectations: Attend both the matching day (16 th September 2016) and final afternoon reception (29 th September 2017) The matching day will give all mentors and mentees accepted onto the programme an opportunity to meet and judge compatibility. The final afternoon reception will give mentoring pairs an opportunity to share and celebrate their process through the programme. Devote an average of two hours per month to the mentoring relationship The time spent on the relationship may vary from month to month, with intense periods following by slower periods as the mentee puts plans into action. There is no requirement on mentoring pairs to meet face-to-face throughout the programme, to reduce any financial or physical strain on participants. At the very least, mentoring pairs must speak on a monthly basis, using free resources such as Google Hangout or Skype. Be respectful, honest, and supportive in their communications Discriminatory, hateful, or aggressive behaviour will not be tolerated, and mentoring relationships will be terminated if any such behaviour is reported. Mentors are expected to listen to mentee s issues/concerns and be prepared to encourage leadership, management, and innovation. Mentees are expected to be honest about issues/concerns and keep an open mind in consideration of mentor s suggestions. Participate in quarterly check-ins with Findacure We will conduct quarterly / call check-ins with all mentoring pairs to monitor progress and happiness with the scheme, and identify areas where Findacure could offer additional support to mentoring pairs. Be willing to participate in the evaluation of the programme We will evaluate the programme at the end of the year to help improve the programme s delivery, and to demonstrate the value of mentoring to future participants and funders.

6 Next steps If you would like to participate in the programme, please complete an application form. These can be found on the Findacure website, where you can also find the deadlines for applying. Other resources which may be helpful in your decision to sign up are Benefits of Mentoring, Feedback from 2015 Pilot, and Peer Mentoring Terms and Conditions.