Announcing the official launch of the CONNECT study

What is The CONNECT Study?

The CONNECT Study is researching whether we can use digital technology to detect in advance if someone who has experience psychosis might be becoming unwell again and prevent relapse.  

Current ways of checking in on psychosis symptoms and seeing if someone might be becoming unwell involve occasional face-to-face meetings with relevant healthcare professionals that rely on the person being able to recall their symptoms over the period since the last meeting.

These meetings are sometimes simply not frequent enough. This can mean that the early warning signs of someone becoming unwell are missed, leading to delayed treatment. In some cases someone might have a hospital admission that could have been avoided. 

This new research involves the development and study of a digital data collection platform, including a smartphone, wearable device and the CONNECT app. Through the CONNECT app, study participants will be asked to answer a short set of questions a few times a week about their thoughts and feelings.

Further information on general movements, sleep patterns and activity levels will also be collected automatically (without study participants needing to do anything) using sensors built into all modern smartphones and the wearable device. 

From this information, they can work out whether changes in thoughts, feelings, and behaviours might be early warning signs of someone becoming unwell again. In this way, it might be possible to detect in advance if someone might be becoming unwell again, with an alert sent to them and their healthcare professional and extra support offered at the time it is needed to prevent relapse.  

What is different about the CONNECT Study?

The use of digital technology is becoming increasingly common in healthcare, with many researching its potential use in mental health. However, The CONNECT Study is particularly unique in a number of ways.

Firstly, the study team are pioneers in digital technology, gradually increasing the functionality of their digital data collection platform over the past 10 years. The CONNECT Study is also one of the largest studies of its kind, taking place across six study sites, recruiting a large cohort of 1100 people with experience of psychosis, and data collection over the entire 12 month study period.

In this way, they will collect the appropriate breadth, depth and resolution of data to be able to predict relapse accurately on an individual basis. They also have many strategies in place to reduce disengagement, which can be a particular problem in such studies.

One such strategy is to ensure that the CONNECT app is adaptive, asking the right questions, at the right frequency and time, for the right individuals. The digital data collection platform has also been developed in such a way that it can link across different healthcare systems allowing rapid translation of the research into clinical practice.

Finally, The CONNECT Study also aims to be an innovative exemplar in Patient PPI. 

Patient and Public Involvement on the CONNECT Study

The CONNECT Study has partnered with The McPin Foundation to lead the meaningful involvement of people with lived experience of psychosis throughout the study.

This includes the establishment and support of a Lived Experience Advisory Panel (LEAP) and wider Involvement Network, both comprising a diverse group of people with lived experience of psychosis to provide input throughout the study.

Each of the six study sites is represented by two LEAP members, local to their respective study site. We are still looking for two LEAP members to represent The University of Edinburgh – if this is of interest to you and you are based in Edinburgh, please do get in touch! 

Through LEAP meetings, workshops and written feedback, people with lived experience of psychosis have so far been involved in priority setting, study design, ethics, user-testing, design of study materials, communications and study team training.

PPI representatives also attend project management group meetings and sit on the project advisory board.

With the launch of the CONNECT Study, PPI work will focus on recruitment, equality, diversity and inclusion, and participant engagement strategies. This will include more local involvement at each of the six study sites, to help troubleshoot any site-specific issues.

LEAP members will also receive appropriate training and support to conduct peer research in the qualitative aspects of the study.

Finally, once data is collected and analysis begins, the LEAP will be crucial in identifying acceptable early warning signs of relapse and ensuring the app asks the right questions, at the right frequency and time, for the right individuals.