Involving patients and the public in the design of research and services is increasingly recognised as best practice. Researchers at Child Outcomes Research Consortium (CORC) and the Evidence Based Practice Unit (EBPU) have recently published a journal article on how they involved young people in the development of Power Up, an app to support shared decision making related to mental health.
Between 25-40% of the population have little knowledge, skills, and confidence to manage their own health and health care (referred to as patient activation) (Hibbard, Stockard, Mahoney, & Tusler, 2004). Empowering patients to be actively involved in the management of their health care and involving them in shared decision making are emphasised in the Health and Social Care Act 2012 (Department of Health, 2013). Evidence suggests this may have a range of benefits to health and care (Hibbard & Gilburt, 2014); for example, a systematic review found that patients were more likely to adhere to treatment when it was in line with their preferences (Lindhiem, Bennett, Trentacosta, & McLear, 2014)
Who was involved
Overall, six PPI co-design workshops were conducted over 18 months with young people who had lived experience of service use from three sources: the National Children’s Bureau, Common Room Consulting (a service user advocacy organisation), and a local Child and Adolescent Mental Health Services (CAMHS) participation group (not involved in the study). Groups comprised 2–10 young people.
Challenges to involving young people we encountered included:
- Balancing what views and preferences expressed by young people in sessions with what was realistic and possible within the scope and resources of the project
- Managing at times conflicting views within a session or across session
- Making sure young people did not feel under pressure to say they liked the app
We report how we addressed each of the challenges above in the article. Our key learning point was how involvement of young people needed to be a cyclical process from views informing ideas which informed engagement and co-design which informed reflections and amendments. To ensure patient and public involvement was embedded in the project, it was important to involve young people from the very outset of the project and at all levels of the project, from governance, design, delivering sessions, interpretation of feedback and dissemination.
We are planning to conduct a study to examine the effectiveness of Power Up in specialist mental health services for young people. If you are interested in hearing more or possible taking part, please contact firstname.lastname@example.org
Please listen to our podcast where we discuss the paper for more information.
Many thanks to Louise Delane and Julian Childs for providing us with this case study