2.5 Data Capture and Storage
How
Sensitive data systems and response options
Ensure data is gathered in a way that respects confidentiality, and that the individual understands how and when information could be shared with other services (Irlam 2012).
Provide training for service delivery staff in how to ask questions sensitively, and in a way that reassures the person that information is being collected to provide the best service.
Ensure data is stored that reflects the person’s name and gender that they identify with.
Forms and data entry fields should include a range of options and cultural variations, as well as a “prefer to self-describe” free text box. This applies to sexual orientation, gender, pronouns, titles, and relationships.
Include intersex variation as a separate question, include a description when asking, and do not conflate with sexual orientation or gender.
Include “prefer not to say” and “don’t know” response options.
Advocate for change where prescribed databases are not inclusive.
Identifying trends
Give staff the opportunity to provide feedback during supervision about any issues arising in data capture.
Monitor data capture over time to ensure quality, accuracy, and inclusiveness of fields.
Identify and report trends, and implement improvement plans in response to changes over time.
Why
Recording comprehensive, accurate, and consistent information about LGBTIQ+ people, or ‘data integrity’ (Ansara 2016), in an inclusive way [25], is important to:
Increase understanding and awareness, and make more informed decisions (Irlam 2012);
Recognise particularly vulnerable and over-represented groups;
Identify important differences (including in service use), intersections, and specific needs; and
Build capacity to respond appropriately, create safe and inclusive environments, and provide targeted service responses.
Although there are a range of reasons why people accessing services may not disclose that they are LGBTIQ+ to staff, any information about LGBTIQ+ people that is recorded in a database or on intake and assessment forms, and during evaluation processes, should be gathered in a way that respects their confidentiality, and clarifies that information is being collected to provide the best possible service. In order to achieve this, managers must ensure that staff are adequately resourced and trained in how to ask questions concerning LGBTIQ+ status sensitively.
For LGBTIQ+ people to provide information about their gender, pronoun/s, sexual orientation, intersex variation, and relationships that reflects their experience, the data recording fields need to include a wide range of:
Binary and nonbinary options (not just an ‘other’ category) (Ansara 2016);
Cultural variations;
Non-heteronormative relationships;
Alternative understandings of family (such as chosen family) and gender-neutral options;
Alternative titles (rather than Miss, Mr, Mrs, etc.) or remove titles altogether;
Options for preferred emergency contacts (including preferred name and gender to be used with each contact) [26];
Options such as “prefer not to say”, “don’t know”, and
Free text box (where people can self-describe).
Importantly, data fields should not conflate intersex variation with gender or sexual orientation categories, and clients should be able to select more than one option. Note that the relationship status that asylum seekers and refugees in particular disclose may not always reflect their sexual orientation or gender identity/experience; for example, if they are legally married to a cisgender heterosexual person in Australia or their country of origin (Noto, Leonard, and Mitchell 2014).
Where possible, any internal data should be stored that reflects the individual’s name and gender that they identify with – not what might be recorded elsewhere as their birth gender or legal name. Failing to have systems in place like this can lead to misgendering or using the wrong name, which may re-traumatise a client and create a barrier to help-seeking.
Example of inclusive database fields.
VictoriaSome services such as Family Access Network in Victoria have developed their own parallel data collection system, enabling them to capture information on LGTBIQ+ status despite limitations of the current national database. Other services, such as Launch Housing, have added fields to the SRS (Service Record System) following consultation with community members. Examples of new fields that have been added are:
Pronouns: She/her, he/him, they/them, name only, prefer to self-describe.
Gender identity: Female, male, trans, Sistergirl, Brotherboy, genderqueer, trans feminine, trans woman, trans masculine, trans man, nonbinary, questioning/unsure, prefer not to say, prefer to self-describe.
Intersex variation: Yes, no, prefer not to say.
Sexual orientation: Asexual, bisexual, gay, heterosexual, lesbian, pansexual, prefer not to say, questioning/unsure, prefer to self-describe.
Note that many more identities and orientations could be included, and that there may be differences in the spelling of some (for example, Sistagirls) [27].
Example of inclusive database fields.
VictoriaSome services such as Family Access Network in Victoria have developed their own parallel data collection system, enabling them to capture information on LGTBIQ+ status despite limitations of the current national database. Other services, such as Launch Housing, have added fields to the SRS (Service Record System) following consultation with community members. Examples of new fields that have been added are:
Pronouns: She/her, he/him, they/them, name only, prefer to self-describe.
Gender identity: Female, male, trans, Sistergirl, Brotherboy, genderqueer, trans feminine, trans woman, trans masculine, trans man, nonbinary, questioning/unsure, prefer not to say, prefer to self-describe.
Intersex variation: Yes, no, prefer not to say.
Sexual orientation: Asexual, bisexual, gay, heterosexual, lesbian, pansexual, prefer not to say, questioning/unsure, prefer to self-describe.
Note that many more identities and orientations could be included, and that there may be differences in the spelling of some (for example, Sistagirls) [27].
Example of inclusive database fields (cont.)
New South Wales Twenty10 in New South Wales provides a range of services for LGBTIQA+ young people, including housing. They also train specialist homelessness services in inclusive data capture and storage in the state-wide CIMS database. Examples of questions and expanded fields under the LGBTQI tab of CIMS include:
What is the client’s gender identity? Male, female, nonbinary, prefer not to say, different identity.
Does the client consider themselves to be: Lesbian, gay or homosexual, straight or heterosexual, bisexual, queer, prefer not to say, different identity.
Has the client had a trans or gender diverse experience? Yes, no, prefer not to say.
Was the client born with a variation of sex characteristics (this is sometimes called intersex)? Yes, no, prefer not to say.
Note that a description is important to include when asking the question as people may not understand what intersex is. “Prefer not to say” and “don’t know” should also be included as possible responses. If “born with” is not part of the question, furthermore, then it could include people who have acquired variations in sex characteristics through other processes.
Example of inclusive intake policy [click to enlarge]
25. For more detailed information about this term and why it matters in relation to this population see (Ansara 2016). 26.For example, see O’Link et al. (2015: 21).
27. This is another reason why it is best to include a ‘prefer to self-describe’ free text box (McNair, Andrews, and Wark 2018)
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