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Advocacy services

Obtaining Consent from Patients who speak little or no English 

The importance of obtaining genuine, informed consent for research was highlighted by the Alder Hey inquiry. As a result it is a fundamental part of the Research Governance Framework. Locally there are many, very practical, problems associated with obtaining consent - not least the range of languages and dialects spoken by the catchment population of the Trust and low levels of literacy amongst some ethnic and Caucasian groups.

In some cases, researchers have chosen to exclude those with limited fluency in English from their sample. However, this

  1. directly contradicts the principles of good research practice.

  2. means that the concerns and views of these groups do not inform the research.

  3. raises questions about the applicability of the findings to the general population.

Failure to adequately address this issue can also present problems when applying for ethical approval.

Advocacy Support for research within Barts and The London NHS Trust

The NRES form for obtaining ethical approval asks for you to demonstrate how provision is being made for patients who speak little or no English.

The Trust Health Advocacy Service (HAS) can help to support researchers:

  • undertaking research where the research is specifically looking at ethnicity or cultural issues.

  • carrying out studies of conditions where prevalence of the disease means a large proportion of participants would normally be non-Caucasian, eg renal disease or diabetes.

Where research is externally funded, the Joint Research Office can also help to get the costs of translation and advocacy included in the grant proposal.

However, in many cases, researchers only contact the HAS when the research is about to start, making it difficult to organise suitable advocacy cover. You are therefore strongly advised to make contact with the Advocacy Service before you submit your ethics application.  Some basic information will be needed from the research team about the project ie. the group(s) you intend to approach and your sample size in order to establish how many advocates and which languages may be involved.

Please complete the required advocacy form and email it to Sonia Augustine, sonia.augustine@bartsandthelondon.nhs.uk at least 5 working days before the application is due to reach the REC.

Download Health Advocacy Service Registration Form.

If you do use the Trust advocacy service, once you have received your ethics approval letter, it is essential that you contact the team to let them know that your project is going ahead, so that they can anticipate the Department's workload.

For further advice please contact Jane Canny, Head of Patient Quality (jane.canny@bartsandthelondon.nhs.uk) or Abdul Jalil, Health Advocacy Team Leader (abdul.jalil@bartsandthelondon.nhs.uk).

Questionnaire surveys

If your research project is questionnaire-based, although the advocacy service does not provide a direct questionnaire translation service, they do provide a read-through service to ensure the translations you have done are comprehensible.  They will also be happy to talk research participants through a questionnaire either over the phone or in person should this be required (it is considered good practice to offer this service if you are giving questionnaires to those who are not fluent in English).  For any of these services you must complete the form available from above, and provide details of exactly which services you would like to access.

If you are carrying out qualitative research involving participants that are not fluent in English questionnaires may not the best way to seek your required information. The Advocacy Service advises the use of bi-lingual research assistants instead, or using the advocacy service interpreters with a researcher present at the same time.

Information leaflets

In recognition of the the Trust's diverse catchment population, the Trust has been working closely with Consumers for Ethics in Research, Agroni (a local community development organisation) and Nania (a translation and advocacy organisation) to develop some basic information on potential participants' rights if they are approached to take part in research. There is also guidance available for researchers, which gives ideas of how to approach communities, recommendations for the design and costing of your research and sources of advice and expertise. The patient leaflets are available on tape in English, Somali and Sylheti. Hard copies of all the leaflets are available from the Joint Research Office or you can download the acrobat files below.

The three information leaflets for research participants are available in five languages and should be used as a supplement to the patient information sheet and consent form produced for any study:

Download Information for participants taking part in large, epidemiological studies (Bengali).

Download Information for participants taking part in family based genetic studies (Bengali).

Download Information for participants taking part in general health research (Bengali).

Download Information for participants taking part in large, epidemiological studies (Cantonese).

Download Information for participants taking part in general health research (Cantonese).

Download Information for participants taking part in family based genetic studies (Cantonese).

Download Information for participants taking part in large, epidemiological studies (Somali).

Download Information for participants taking part in large, epidemiological studies (Turkish).

Download Information for participants taking part in family based genetic studies (Turkish).

Download Information for participants taking part in general health research (Turkish).

Download Information for participants taking part in large, epidemiological studies (Vietnamese).