Section 1:

What is the purpose of PsyGrid?

PsyGrid is a project that will provide resources to health care professionals, researchers and other people who have an interest in first episode psychosis.  It is hosted on the internet and the information that is discovered from interviewing people is stored anonymously and will be available for care-research to progress Mental Health Treatment. 

Need to include

• Leaders in the field of psychiatry and computer science working together
• Using the most up-to-date on-line technology (“e-science”) to host the database
• Eventually aiming to enable research into different aspects of first episode psychosis, such as how the illness develops, and the most effective ways for treating it. 
• Data will remain anonymous 

What is the purpose of PsyGrid Outlook?

This is the first phase of PsyGrid and is the accumulation of the initial information gathered covering a broad range of  clinical and demographic data from First Episode Psychosis clients.  The aim of this information is to facilitate further studies and assist with NHS service planning.

What is e-science?

Who is behind the project?

The Medical Research Council and the Department of Health have funded the project.  It is being co-ordinated through the Mental Health Research Network which is a clinical network of NHS Trusts and Universities throughout the country.

Why do we need access to medical records?

A lot of information is stored in medical records and it is helpful for us to be able to access this.  Sometimes records can contain information that people cannot remember.  It can also be helpful to get information which has already been provided so we do not need to ask the same questions again. However, if a client does not wish the researcher to have access to their medical records, yet wishes to participate in the study, they may specify this on the PsyGrid consent form.

Who can take part?

We are inviting people to take part in the project who have recently made contact with mental health services for help with experiences such as hearing voices or being troubled by unusual thoughts.

We are working with mental health services in the 8 study areas to identify people who have recently had help with these experiences.  People aged 16 – 65 can take part in the project, as long as they live within the study catchment areas.

What does taking part involve?

If someone decides to take part in the project the researcher will meet with them a few times soon afterwards to ask some questions and talk about their experiences. The questions are not a test and there are no right or wrong answers; we are simply interested in people’s experiences and their own views about many aspects of their mental health.

How much of my time will taking part take up?

This depends on how well you are at certain times but it is hoped that the assessments will take 3-4 hours in total but this can be split into sessions which last as long as you want them to. These initial sessions can take up to a total of 3/4 hours or so. However we encourage breaking this down into several much shorter sessions, as 4 hours of questions would be tiring for both researcher and participant!

How often will I have to take part in the study?
After the initial assessments we also ask to see people again after 6 months and after 12 months.  We will ask some of the same questions to find out how people are getting on. These “follow-up” assessments will take 1-2 hours.

Where will I have to go to take part?

The researcher will meet participants at a time and place that suits them.  This could be at their home, or if they would prefer at a health centre or the mental health team offices.

What if I want to take part but my family doesn’t?

That’s fine!  It can be helpful for the researcher to speak to a family member to ask about things from their perspective.  This is why we ask for additional consent from participants to contact a relative.  However some people do not want us to talk to a family member, sometimes a person’s family is not available or they just don’t want to take part.  In these cases the person can still take part in the project as we are still interested in their views and experiences.

How do you keep the information anonymous?

The information people give us is put onto a secure electronic database.  When we do this we do not include the person’s name, address or other identifiable information. All records will be completely anonymous.

What do I get out of it?

Taking part in the project may not benefit participants directly.  However our experience has shown that some people find it helpful to talk about and reflect on their experiences. Participants have the option to consent for their assessment results to be used by their clinical teams. This can be really useful to the teams, informing and enhancing their clinical care. This improved quality of care would hopefully bring benefits to the client. Many participants value knowing they are contributing to a study that seeks to enable further research in this field and improve people’s knowledge about first-episode psychosis.

Section 2:

Who will be able to use the information?

Clinicians, such as Doctors, nurses, psychologists, as well as students and members of the public will have  access to anonymous data from the database.  It is hoped that the information will assist in further research projects in the Mental Health field.

Who will own the information?

The Principle Investigator at each of the eight sites throughout the country is the person who owns the information. 

When will the project deliver medical benefits?

The Outlook project, the first wave of information collection, is to last over three years but researchers will be adding bolt on studies prior to this, within the first twelve months.  It is hoped that within 36 months there will be enough data to be published. This is hoped to help improve clinical practice and NHS service planning.  

What if I change my mind and want to withdraw?

Taking part in the project is voluntary.  This means it is up to the individual whether or not they decide to take part.  If someone decides to take part in the project they are free to change their mind at any time and they do not have to give a reason.  Not taking part or withdrawing from the project will not affect the care they receive.

Who do I contact if I want more information?

At each research site there is a designated PsyGrid researcher who will be able to be contacted if you want to know anything more about the study.  You will be given their contact details as soon as you are approached to participate.

Will you tell anyone that I have taken part?

When someone agrees to take part in the project we will let their GP know.  This is because your GP has overall responsibility for your healthcare. Your clinical team will also be informed that you are participating in the study. However, it is up to you whether we feedback the results of assessments to them.  Likewise, it is up to you whether we contact your family to ask them to participate.

What will be the benefits of this study?

In the long term the benefits are that researchers and people concerned with treating people with mental health problems will have access to a lot of information to assist them to develop new interventions in care. Research will be conducted using data obtained through PsyGrid which could improve our knowledge about first-episode psychosis and have implications for improving interventions for those who experience it.

What sort of questions will you ask?
We want to find out more about people’s experiences.  We will ask questions about how people are feeling, including questions about their thoughts and their mood.  We will also ask people about what they were like before they became unwell, and what happened in the time leading up to their contact with mental health services.  We also ask people about the medication they are taking and how this makes them feel.