Every service should be clear on who in their teams is responsible for asking about and recording demographics data. It should also be clear when that information needs to be collected and should be embedded into routine processes. Training opportunities should be made available to everyone involved in asking for demographic information to emphasise why it’s an important part of the care provided to patients to not make assumptions about their identities, as well as its importance in the broader understanding of equality. It is the responsibility of the provider to ensure the information relating to the patient is kept up-to-date and is accurate.
This information might be collected using a self-administered questionnaire on paper or online, including a brief explanation of why the data is being collected and how confidentiality will be maintained. This could also be collected as part of a consultation or conversation with a patient, ensuring from the outset they know why they are being asked and to use appropriate language.
Data confidentiality and security is extremely important to note and communicate to patients so they understand that though this data is collected, patients are not identifiable though the MHSDS or IAPT Data Set. Further information on how NHS Digital protects patient data can be found on their website.
To increase the extent to which those working in services value the collection of demographic data, systems should ensure that they are routinely using the data collected to identify opportunities to improve patient care. Increasing the visibility and use of the data will ensure there is direct value for clinicians and other relevant stakeholders in increasing the completeness and accuracy of what’s recorded.
What to do when the patient can’t self-identify, such as crisis care
When asking services users for demographics data, it is important for providers to identify where in the care pathways it is best to aim to capture this information. In services there will be times where it’s not possible for patients to self-report the full range of information required, such as in crisis care.
In these scenarios it may necessary to infer some information when that directly impacts the patient’s care requirements. That information must then be reviewed in collaboration with the patient at a more appropriate time to confirm it is accurate and that all information not initially captured is completed.
To achieve this, follow up services should consider what prompts to review this data are needed in clinical and service processes and in clinical systems. For example, if a patient is referred to a community team from a crisis service, the community team should be responsible for reviewing demographic data recorded with the patient to ensure it remains accurate.