December 11, 2019

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By Nev Jones

Motivated by a long-standing commitment to transformative early intervention praxis, in 2018 the IEPA board launched a ‘lived experience’ visioning initiative designed to embrace and support people with lived experience and their family members in organizational activities and promote participatory methods across the field. Key components of IEPA’s strategy are summarized below.


Building the Pipeline.

In order to more fundamentally transform early intervention research, a steady pipeline of students and early career researchers with lived experience of services or caregiving is essential. In order to support the future of the lived experience research workforce, IEPA is exploring mechanisms for funding lived experience travel scholarships and targeted mentoring, networking and capacity building opportunities at biennial conferences.


Disrupting the Traditional Academic Conference.

While practice-oriented conferences have increasingly embraced greater inclusion of broader stakeholders, including people with lived experience, few research conferences have developed strategies to actively include and elevate students and researchers with lived experience. Beginning with IEPA 11, multiple service user researchers were invited to join the conference scientific committee, reduced fees for registrants with lived experience and their  families were introduced, and the conference program featured multiple symposia, presentations and adjunct activities focused on participatory methods, user experience and co-production. At future conferences, IEPA leadership are considering a regular participatory research stream and explicit efforts to ensure high profile plenaries or symposia featuring lived experience  research involvement and leadership.


Co-Producing by Example.

Beyond the IEPA biennial, the board is considering future ways in which organization infrastructure might be rejiggered in order to support full participation in high level decision making. Currently, for example, the Board includes dedicated regional vice presidents representing North America, Asia, Europe and the Global South, an organizing strategy that could be extended to  lived experience and family research leaders, helping ensure ongoing representation.


International Thought Leadership.

In future cycles, the IEPA Lived Experience workstream will undertake development of an international consensus statement designed to promote youth, lived experience and family participation and leadership in early intervention research.

To kickstart this transformation IEPA has launched the IGNITE: Transforming Early Intervention Together fundraising campaign. Funds raised through this crowdfunding campaign will be used towards the following proposed initiatives:

  • Travel scholarships for lived experience students and/or early career researchers otherwise unable to attend the biennial conference.
  • A mentoring luncheon for lived experience students/early career researchers designed to forge relationships between influential senior researchers and up and coming lived experience researchers
  • Endowed plenary or award designed to ensure high profile presentations featuring co-production, participatory methods, and/or lived experience research leadership at all biennial conferences
  • Funding for the in person convening of an international workgroup focused on the development of an international lived experience involvement consensus statement and guidelines

Please donate generously to help us implement this strategy. We also urge you to share details of this campaign as far and wide as possible so that we may reach as many people as possible – the more money we raise the more we can achieve!