Patient FAQs

ResearchOne is a database of non-identifiable information collected from healthcare settings in England. Some of your de-identified health information may be included in ResearchOne in order to help improve  patient care, patient experience and to drive efficiency within the NHS.

If any of your healthcare providers has opted-in to this project, then this anonymous data will be stored on ResearchOne. You can still opt-out of having your anonymised data used for research purposes. Just ask any of your healthcare providers to record this preference for you.

For more information please read the answers to frequently asked questions below, or contact us directly.

FAQs

What is ResearchOne?
How am I involved?
Why does my health care provider contribute data?
What type of data is on the ResearchOne database?
Who runs ResearchOne?
Who monitors ResearchOne?
Who uses ResearchOne?
How is the data collected?
How is my information kept confidential and not identifiable?
What if I don’t want to be involved?


What is ResearchOne?

ResearchOne has an electronic database of non-identifiable patient data collected from health records across England. At present more than 25 million patients have the opportunity to contribute non-identifiable healthcare data. Researchers with ethical approval use ResearchOne for health and social care research. Information about these research projects is available here. ResearchOne is an invaluable resource for public health research due to the depth, relevance and quality of the data stored.

 

How am I involved?

Your healthcare provider may use the TPP SystmOne clinical system to maintain your electronic patient record. This contains the details of your treatment and medical history in order to help provide you with high quality healthcare. Anonymous data from this electronic patient record is transferred to ResearchOne to facilitate medical research and to benefit public health. No identifiable details, such as name, full date of birth, address or NHS number are transferred to ResearchOne. Similarly no textual information is transferred in order to maintain patient confidentiality.

You might receive care from more than one organisation.  Your information will only be used from those organisations that are participating in ResearchOne.  Let one of your care providers know if you would not like your information to be used in research.

Each person who contributes data is helping to improve future health and social care by creating an important research resource, representing an accurate picture of people’s care across England.


Why does my health care provider contribute data?

Your healthcare provider has chosen to contribute to ResearchOne in order to support quality, high-impact medical research, to drive innovation and to deliver the best possible health care for everyone. ResearchOne also helps your provider to improve the quality of their electronic records and to get early access to, for example, new risk prediction and decision support tools.


What type of data is on the ResearchOne database?

Selected healthcare information from electronic patient records is included on ResearchOne. This includes current and past medication, diagnoses, allergies and sensitivities, laboratory results and vaccinations, for example. A full list of the stored data types is available in the database system summary. No information that could identify you or your healthcare providers is available to researchers. In order to provide an even more comprehensive research environment, the information may be linked with hospital and disease registry data. This is will only be done if the appropriate ethical and governance authorities have approved this data linkage. Patient confidentiality remains the highest priority and is never compromised.


Who runs ResearchOne?

ResearchOne is run by TPP as a not-for-profit enterprise. TPP manage the patient health records in the SystmOne clinical information system used by your healthcare provider. TPP store all data in fully NHS accredited centrally-hosted secure data centres. This provides the highest possible security level for data storage and access.


Who monitors ResearchOne?

ResearchOne is developed with the approval of the NHS Research Ethics Committee and subject to their ongoing monitoring. Governance advice is provided by the National Information Governance Board for Health and Social Care and ensures the necessary safeguards for the appropriate use of patient information. The database system summary includes the confidentiality agreement and guidelines for researchers. Further information is also provided under ‘Ethics Information’.

There are two committees that govern the management and use of the information. The ResearchOne Database Committee monitors all actions involving ResearchOne and includes patient representatives, healthcare providers, academic members, researchers and TPP directors. The committee members have years of experience in the medical research sector and the governance and ethical issues which surround it. An additional ResearchOne Project Committee ensures that all research is of high quality, is relevant to current public health initiatives and does not breach patient confidentiality.


Who uses ResearchOne?

ResearchOne is used by researchers who have ethical approval from the NHS Research Ethics Committee and any additional appropriate governing bodies. The ResearchOne Project Committee is in place to guarantee that approved projects will be of benefit to public health across the NHS. Researchers will only have access to minimal set of information needed for their research to progress effectively.

Further information about the types of projects that can use ResearchOne de-identified data is available on the Projects page.


How is the data collected?

Information is entered into your electronic patient record by your healthcare provider. If your provider has consented to share research data and you have not decided to opt out, then appropriate anonymous information is automatically included in the ResearchOne database at regular intervals. This process all happens electronically; patient information is never physically collected or manually entered into the database in order to maintain the security of patient information.


How is my information kept confidential and not identifiable?

All data stored in the de-identified ResearchOne database is non identifiable. This means that such information as name and address is not ever brought into the database. Researchers are subject to a duty of confidentiality and their use of the data is monitored to ensure confidentiality. The ResearchOne database is stored centrally and securely in data centres hosted to full NHS security standards. The policies around protecting privacy, use and data storage are available in the database system summary.


What if I don’t want to be involved?

If you do not want your data to be included in ResearchOne then please discuss this with your healthcare provider. They will record your decision to ‘opt out’ on your patient record and your data will be automatically removed from ResearchOne within seven days.