Data collection

Embedding inclusion at the design stage will make your research more accessible and result in higher quality, more impactful and cost-effective research. This will increase the likelihood of your study recruiting sufficient participants, achieving diverse participation and keeping to its timelines. It also signals to prospective participants that you are considerate of their needs and preferences. This is particularly important when trying to recruit and include groups of the population that are under-served. It is common to see grant applicants making statements about their intentions to recruit a diverse sample, but a reviewer may ask, ‘Which measures will be taken to make the research inclusive, and what expertise does the team already have in conducting research with diverse and under-represented populations?’.

Many studies have examined barriers to the participation of under-represented and minority groups in applied health and social care research. The greatest focus is on how to more effectively include Black, Asian and minority ethnic communities (Prinjha et al. 2020; Ahmed et al. 2019; Lloyd et al. 2008; Hussain-Gambles et al. 2004). Useful resources include:

• the Centre for Ethnic Health Research’s (2018) toolkit for increasing the participation of Black, Asian and minority ethnic communities in health and social care research and
• the INCLUDE Ethnicity Framework

These resources highlight the importance of tailoring approaches to including different communities through being aware of different linguistic, communication and practical needs, and differing levels of health literacy and awareness of health and social care research. They also emphasise the importance of building trust, developing reciprocal relationships, and developing strong links with relevant contacts and community organisations.

Researchers need to have good cultural awareness and knowledge e.g. being familiar with common foods that are commonly eaten within different ethnic communities in research that asks questions about diet, as Prinjha et al. (2020) advise. Some research topics or questions might be culturally, religiously or politically sensitive amongst different communities. Medical conditions, treatments, social care needs and healthcare experiences that researchers may feel very at ease with discussing may be very controversial or offensive to tackle without first building sufficient trust and understanding (e.g. Culley et al. 2007 in relation to South Asian communities and infertility).

Other issues to consider are whether participants would prefer to engage with researchers who are either from inside or outside of their communities (Vickers et al. 2012), and for data collection activities to be differentiated by sex, age or faith (Centre for Ethnic Health Research 2018). Early patient and public involvement is essential to guide your decisions and it is important to avoid homogenizing the preferences of communities and remember that there are often as many differences within communities as there are between them (Riggs and das Nair 2012).

Language and communication are key issues. There are significant scientific limitations if you exclude prospective participants who cannot give informed consent in English. Often, therefore, it will be necessary to allow sufficient budget and time for translation of written materials and/or for the use of interpreters (see ‘Budgeting for Inclusion’ domain). There are various issues to consider with translation and the use of interpreters, whether for translating outcome measures, seeking informed consent or conducting qualitative interviews via an interpreter.

Barriers related to communication are not unique to minority ethnic communities. Wider questions need to be asked about how accessible your research is to those with low literacy, and those who do not have easy or any access to the internet:

• If prospective participants need to have an email address in order to be recruited, whose voices and experiences will be omitted?
• Can opportunities to participate be communicated in other ways?
• How should communication (written and verbal) take neurodiversity into consideration?

Accessibility also requires consideration:

• How far will participants have to travel to take part in the study, and what support is being given to those to who live in rural areas, who are disabled, or who are carers?
• Is it possible for some testing or follow-up monitoring to take place in general practices or other community facilities or remotely, rather than in hospitals?
• Can participants choose from a range of times to attend appointments for either an intervention or data collection to fit around work, care commitments and the availability of informal carers? Can child care facilities be made available?
• Can methods or data collection protocols be amended to enable those with physical or cognitive processing impairments to participate, and to ensure informed consent?

Thinking through these issues at the design stage is critical because they may have cost implications.

A growing literature has also shared learning and recommendations for conducting health or social care research with various under-served groups, not exhaustively:

Although various adaptations can be made to conduct research to be inclusive of different needs, it might be necessary to consider whether conventional methods are going to be most effective for the population(s) that you are studying. Conventional methods such as questionnaires, interviews and focus groups may not be very accessible to those with low literacy, social anxiety or cognitive impairment  (Fearon 2019; Phillipson and Hammond 2018). They may also feel overly formal or objectifying to research participants. When trying to reach a community that feels disempowered, under-valued or misrepresented by health and social care professionals and researchers, participatory approaches such as participatory action research may help to redress power imbalances and share knowledge and skills (Baum et al. 2006; Cargo and Mercer 2008). More novel and creative approaches could also be used, such as:

• photovoice (Drainoni et al. 2019; Cluley 2017)
• photo elicitation interviews (Fearon 2019)
• arts-based methods (Bird 2017; Coemans and Hannes 2017)

These methodologies are less dependent on verbal communication and can offer insights which are multi-sensory and may be a less threatening and more empowering means of exploring sensitive topics.

NIHR are aware that changes to data collection methods to improve the inclusivity of the study may result in additional costs. As of 27 November 2024, reasonable and justified costs associated with these changes will be covered by NIHR and will not affect the study’s value for money.

Key messages

• It is important to scrutinise each step of the data collection process for barriers to participating that could affect participant recruitment, retention, experience and the quality of the data that you will collect.
• Creative and innovative methods such as arts-based methods and photovoice may overcome some communication barriers and yield rich data in a way which is also more empowering for participants.

• Autism@Manchester’s guidelines for conducting research with the autistic community
• Centre for Ethnic Health Research’s toolkit for increasing the participation of Black, Asian and minority ethnic communities in health and social care research
• NIHR (2024) Disability Framework
• Social Change UK – A brief guide to creative research methods
• The INCLUDE Ethnicity Framework is a valuable resource for planning trials and includes prompts for considering what barriers may prevent different ethnic groups from participating in clinical trials, and how to address these.

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