uMed for Patients

Patient participation in medical research is vital for the discovery of more advanced treatments. uMed partners with healthcare providers to deliver medical research opportunities that are the most relevant for their patients.

This means we can offer you as the patient the opportunity to participate in the research that matters most to you and where you can have the greatest impact.

Under a Data Protection Agreement between uMed and your GP, uMed has access to some data from your health record.

Without access to this information, it would be impossible for us to find the most suitable patients for research studies that can help fight disease.

If you decide to participate in a particular research study, we will always ask for your consent to share your data with a study nurse or trial site.

Unless you have opted out of NHS data sharing, uMed receives the following information from your healthcare provider:

• Name
• Date of birth
• NHS number
• Phone number
• Email address
• Demographic area
• Health record information
• Correspondence between you and your healthcare professional, or between healthcare professionals about you

In order to provide relevant research opportunities to you and your healthcare provider we process patient data to our secure uMed Platform. The patient data typically includes name, identifiers, contact details, demographic data and relevant health record data.

We only process this data if you are identified as a potential candidate for a research study and we need to contact you on behalf of your healthcare provider to ask if you would like to participate.

You remain in charge of your data at all times and can opt out of contact, sharing data, or study participation at any time.

The uMed Platform separates all identifiable information from your health data. Therefore your health data is anonymised and is never presented simultaneously with personally identifiable information (PII).

An encrypted link identifier is the only connection between the two which allows your GP to send you relevant opportunities based on this data.

No, uMed uses your information only for the purpose of helping your healthcare provider to give you the best opportunities to participate in medical research.

uMed conforms to the requirements of General Data Protection Regulation (UK GDPR) that sits alongside the Data Protection Act 2018.

uMed complies with the NHS Data Protection & Security Toolkit (ODS 8K677), ISO27001:2013, and is Cyber Essentials Plus Certified.

This will depend on the type of study being offered to you:

Cohort study (e.g ACCESS-PD Parkinson’s Disease study) – In order to develop more advanced treatments, researchers need to collect information from patients over time to improve their understanding of how patients experience living with a certain condition.

When joining a Cohort study, you will be asked to answer a short questionnaire and may then be offered a range of additional research opportunities most relevant for you.

Importantly, you can participate in these studies at home without needing to visit your GP/hospital, and participating will not cost you anything. Additionally, to show our appreciation for your time, we may offer to make donations to a charity of your choice.

Clinical trial – Clinical trials look into how effectively new treatments work to reduce patients’ symptoms and improve their quality of life.
Participation may involve visit(s) to a GP/hospital site during the trial. For some trials you will be reimbursed for travel and possibly financially compensated for taking part.

Acting as a data processor, uMed provides services to your GP practice. This includes contacting you on their behalf to offer you the opportunity to be part of studies that may be relevant to you.

uMed will seek consent on behalf of your GP practice to share relevant information with members of the team who are conducting the study. By giving consent, ‘signing’ ‘Yes’ on the screening consent question, you are consenting uMed to transfer this information from your GP to the Study Team.

Your consent is required before uMed passes your details to the Study. To provide informed consent you must understand the purpose of the Study (i.e. what questions they are seeking about), to whom the information will be sent, what the potential implications could be (i.e. an understanding that further information may be required from your GP, hospital records, etc) and the consent should be given freely.

You can withdraw consent by ‘signing’ ‘I do not consent’ on the screening consent question. You will also have the opportunity to withdraw consent when contacted by the Study or at any point during the life duration of the Study or after the Study is ended.

For more information, view our guidance on informed consent here.

You remain in charge of your data at all times and can opt out of contact, sharing data, or study participation at any time. Only your GP can process your opt-out form. Opt out of sharing your health records – NHS