To develop a checklist (set of guidelines) for best practice in mental health data science research, which would guide the future launch of a Mental Health Data Network.
Sue Fletcher-Watson introduces the research
Our ultimate goal
The ultimate goal of this MRC funded project is to develop a data science platform where every NHS patient is a research participant. However, to do this, the researchers must make sure that the community are informed, involved and confident in the endeavour.
Public opinion on data sharing
Our pilot data (see below) suggests many people see value in their data being shared for research, but more work needs to be done before a UK wide Mental Health Data network could be launched. In particular, we need to understand any issues specific to mental health data.
Partnerships and diversity
An important aspect of this will be ensuring that the platform is developed in partnership with stakeholders, including people with experience of mental health conditions, their family and supporters; practitioners in clinical, social care and education services, and charity partners.
A key challenge in this process will be how to capture the diverse range of opinion between stakeholder groups (including people with different diagnoses). If we want to develop coherent guidelines, we need to find a way to synthesise a range of perspectives.
Our aim is to gather representative data on public attitudes to data linkage and convert it into a series of best practice guidelines for data science research.
1. An Online Survey
This survey was aimed at anyone who had experience of using the NHS.
By collecting details about most recent/regular NHS contact, researchers will be able to compare the attitudes of different groups towards data linkage (e.g. those who mostly see their doctor about diabetes versus depression).
[NB: The survey is now closed]
These will take place both face-to-face and via social media. They will include people with both current and previous experience of mental health conditions and will provide richer, in-depth information about attitudes to data sharing.
3. UK-wide Delphi Study
The aim of this activity is to generate a set of guidelines for mental health data science research.
- Participants will be “experts by experience” from across the UK, i.e. patients with experience of service use and research participation.
- Collaboration will take place via an online platform, where researchers will share their draft guidelines and invite participants to critique, modify, and merge them.
- The above process will be repeated several times until a final set of guidelines is agreed upon.
This method is an established technique for systematically converting collective, tacit knowledge into concrete guidelines.
4. Final version of guidelines
The final version of the guidelines will be published as a concise checklist for best practice in mental health data science. We will also disseminate our findings to the public via short online animations and Science Festival events.
Stakeholder Advisory Group
The Edinburgh MRC Pathfinder projects are overseen by a Stakeholder Advisory Group, a gathering of individuals from the mental health community, which meets formally twice per year.
The first meeting, held in October 2018, addressed topics such as the aims of the project and the terminology that should be used when discussing mental illness. In addition, the stakeholders provided feedback on a draft version of the data sharing survey. This feedback was incorporated into the survey prior to its release to the general public.
The staff involved in this project have track records of high-quality participatory research combined with effective public engagement. In setting up this project they’ve capitalised on existing links and forged new connections. They work with third sector organisations including Scottish Autism and the Scottish Recovery Consortium, patient-led groups including Bipolar Scotland and VOX Scotland, and professional bodies such as NHS Scotland's Mental Health Network.
Dr Sue Fletcher-Watson has a background in participatory research, especially in the area of autism. You can read her thoughts on working with an Autistic mentor here.
Dr Stella Chan leads Project Soothe, a citizen science initiative which invites members of the public from around the world to submit images which they find soothing. The project seeks to learn more about the ways in which people self soothe, whilst generating a bank of images for use in future research studies.
Related Podcast / Videos
Early Autism Research
Autism Matters Podcast
Highlights from Resilience Ceilidh
An introduction to Project Soothe