Public Involvement

How have public and patient representatives (PPI) been involved with our work so far?

Two members of our Facebook PPI group worked closely with us on designing and delivering the STAR family study. We visited our PPI members at home to discuss the work, as well as having regular e-mail and phone contact.

They were instrumental in: helping develop patient facing materials; selecting the best measures to include in our survey; sensitively phrasing patient information and questions about women’s family situations; testing the online survey; guiding engagement with patient groups via online forums and support groups.

As part of the study we held a joint lay and professional stakeholder event in January 2017 to identify research priorities. Four patients attended this meeting, including one of the members of our online PPI panel, two formal PPI representatives, and one other woman with an ARD. We used a variety of interactive activities on the day to identify gaps in support, generate ideas for interventions, and rank research ideas in priority order.

Since the event, the PPI members have helped us to further develop the ideas for an intervention, design a potential further study so that it would be engaging and acceptable to patients, and have helped us think through how the intervention should be targeted and delivered.

They have also contributed to writing of a further funding application, focusing on ensuring that the lay sections were clear and accessible.

How can I get involved? 

In the Autumn, we'll be starting to plan new projects. We're looking for patients, partners, and other family members to help shape this research to make sure it's addressing the questions that are important to you.

We have set up a Facebook group so that we can share ideas. If you're interested, please search for 'STAR Family Study Patient and Public Involvement Group' on Facebook or follow this link