What is Count Me In?
Count Me In is a new system which aims to widen participation in research. It will encourage and make it easier for more patients and service users to get involved in research activities.
What do you mean by research activities?
Research activities include clinical trials, asking people about their perceptions and experiences, testing new technologies, evaluating new techniques and using the results to plan improvements to services.
How is it different from the usual process of recruiting patients and service users to research?
It allows researchers to directly contact patients and service users, instead of relying solely on the patients’ clinicians.
The Count Me In system will identify patients and service users who fit the criteria for particular research activities. Individuals are then informed about opportunities to participate – unless they have opted out.
It means we no longer have to heavily rely on clinicians to approach people individually. The new system means that authorised Mersey Care staff can reach more people who may be eligible for research across Mersey Care's services.
Will data be held securely?
The Count Me In system and the computer-based Trusted Research Environment (TRE) used to store patients’ records are governed by the same strict confidentiality and privacy rules as medical records.
The TRE is a highly secure and Mersey Care controlled computing environment that allows approved researchers a safe way to access, store and analyse sensitive data relevant to their research.
Data protection protocols are strictly followed, and information is only shared with consent.
Do patients and service users need to opt in?
There is no need to opt in: Unless they opt out of receiving information about research opportunities, all patients and service users’ records will be accessible through the Count Me In system and the TRE.
If patients are automatically opted in, how are they being informed?
A range of communications is being used to inform people about Count Me In including messages in appointment letters; posters and leaflets; videos; screens in waiting areas and more.
How can people opt out?
Anyone can opt out by either:
- Completing an online form
- Calling 0151 351 8476 from Monday to Friday, 9am to 5pm, to receive assistance to complete the online form
- Consulting with their clinicians, who will direct them to option 1 or 2.
*Patients can also opt-back in by following the same process above.
Is Count Me in being rolled out now?
The first phase is the launch of the opt-out facility which is now live. Anyone can now opt out via the web form or phone number (details above).
The second and final phase involves building the technical system and establishing data protocols, which is expected to be complete by the end of 2024. At this point, it will be possible for researchers to contact patients and service users who might be eligible to take part in research activities.
How does Count Me In work? Can you explain the process detail?
- A researcher makes a request to the Count Me In team to find out how many patients / service users match the criteria for a particular study.
- Data scientists match research criteria against electronic health records held in the Trusted Research Environment.
- The Count Me In project manager cross references data with a master list of opt-outs.
- Results are shared with the researcher, using only patient ID numbers to protect privacy.
- The Count Me In project manager (and supporting clinicians) contact eligible individuals to ask if they would like more information and are interested in taking part.
- ID numbers for interested patients / service users are passed to the researcher.
- The researcher provides detailed information about the study and obtains consent, adhering to strict data protection protocols.
- If a patient / service user consents to participate, research activity begins.
