Why is this important?

Previously, no specific code existed, and research teams had to rely on other consent/dissent markers to identify patients who might not want information about primary care research.

The new codes ensure a consistent approach, empower patients by giving them a clear choice, and distinguish research participation from other opt-in or data-sharing decisions.

PATIENTS WHO DO NOT WISH TO RECEIVE RESEARCH INVITATIONS

When a patient decides they do not wish to receive research participation invitations, record the following SNOMED code in their record:

SNOMED CODE - 1771641000000107 | Dissent to receive invitation from general practitioner practice to participate in research

All future research projects, including pre-built E-Searches, will automatically exclude any patient with this dissent code.

WITHDRAWING DISSENT FOR PATIENTS WHO CHANGE THEIR MIND

If a patient who previously dissented now wishes to receive research participation invitations, record the following SNOMED code in their record:

SNOMED CODE - 1771651000000105 | Dissent withdrawn to receive invitation from general practitioner practice to participate in research

All future research projects, including pre-built E-Searches, will use the most recent code. Therefore, if a more recent dissent withdrawal code is added, the patient will be included in the search results.

WHAT DO RESEARCH SITES HAVE TO DO NOW?

• • If a GP site has used any opt-out or data sharing dissent codes to exclude patients  from research invitations, we suggest a review of these historical codes, contact the patients and update the records with the most appropriate new code.

  • Some practices may have used a different code, specific to their practice, to record a patient’s dissent. Those sites will need to update those codes and update the patients records with one of the new codes.

  • Important!! Communicate and promote this change of approach with all your patients to ensure they are aware of their choices! 

TO SUPPORT PRACTICES

We have developed a concise set of SystmOne and EMIS "CASEFINDER" searches to assist practices in identifying patients with dissent codes related to various opt-in/out and data sharing projects. Previously, these codes were broadly applied in E-Searches to indicate potential patient dissent.

Given that these codes may not specifically denote dissent for research, we recommend practices review and update them with the new codes as needed. This also serves as an excellent starting point for patient communication, as those who have previously made choices about data sharing are likely to have opinions on other consent and dissent options.

RUNNING THE SEARCHES

1. Download the searches from the NIHR portal.

2. Import them into SystmOne/EMIS and Run them.

3. Review the patients within each of the Case Finder lists.

4. Add the new Dissent Code (1771641000000107) where applicable.
   DO NOT BULK ADD DISSENT CODES based on the case finder results. 

Promote patient choice to all patients and code patients when/if they inform you of their updated choice.