Protecting the vulnerable

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In January 2016, MRS produced a best-practice guide and checklist to help practitioners identify, understand and respond to research-participant vulnerabilities effectively and consistently.

Since the Data Protection Act 2018 was introduced – which emphasises showing accountability throughout the data-collection process – a new section on vulnerable people has been added to the 2019 Code of Conduct. This will help ensure the needs of vulnerable participants are considered in developing products and services, policy-making and regulatory supervision and enforcement.

Best ethical practice is reinforced by new code rules covering vulnerable people, underlining the importance of our members’ professional activities being widely accessible:

Rule 23. 

Members must take reasonable steps to assess, identify and consider the particular needs of vulnerable people involved in their professional activities.

Rule 24. 

When working with vulnerable people, members must ensure that such individuals are capable of making informed decisions and are not unfairly pressured to cooperate with a request to participate, and that they are given an opportunity to decline to take part.

These rules require members to make every reasonable effort to ensure that their professional activities do not cause harm – either to those who have participated directly or, more broadly, to anyone affected by it. This includes members taking reasonable action to ensure that others do not breach or cause a breach of the code.

Vulnerability can affect anyone 

Participant vulnerability is a complex, dynamic state that can affect anyone at any time, for many different reasons. All participants are different, with a wide range of needs, abilities and personal circumstances.

Some people’s ability to participate effectively in the research may be affected by certain individual characteristics. These can be short-term or long-term, might fluctuate over time, and may not be obvious. Participants may be vulnerable because their competence to give informed consent is uncertain; because, socially, they are in a position where it is difficult for them to give informed consent; or their circumstances may affect their decision to consent. Additionally, being involved in the research project can increase participants’ potential vulnerability.

It is also important to recognise that not all the risk factors will be relevant all of the time, and the important point is to manage the relevant risks rather than seek to avoid risks involved in researching individuals or populations in vulnerable positions.

Permanent vulnerabilities 

Permanent or long-term characteristics could include: people who have learning disabilities or other permanent or long-term disabilities; those on a low income; people with low literacy levels; or communities that have cultural barriers to participation. These characteristics can affect large numbers of people.

Fluctuating vulnerabilities 

People can be made vulnerable by transitory situations that are not necessarily obvious at first glance. Fluctuating characteristics might include: mental health issues; English not being a first language; health problems; location; or lack of internet access.

Short-term vulnerabilities 

Short-term characteristics causing vulnerability could be factors related to sudden changes in circumstances, such as loss of employment or income, bereavement, relationship breakdown, or caring responsibilities.

Methodologies matter

The impact of vulnerability on the data-collection exercise will also vary according to the type of methodology used in the project, for example:

Telephone 

Some participants find it difficult to differentiate between genuine research calls and selling under the guise of research (sugging), fundraising under the guise of research (frugging), or personal protection insurance (PPI). Members must realise that calling a telephone number after a firm refusal has been given is in breach of the MRS Code, as it is likely to cause harm, adverse effects and damage the reputation of the sector. This is why MRS requires its members to maintain ‘do not call’ lists to avoid harassment of individuals.

One-to-one interviews

Many participants – particularly the elderly or less mobile – are understandably wary about inviting interviewers into their home. This also applies to the safety of interviewers and researchers when this methodology is used. As such, practitioners must be trained in how to alleviate a threatening situation.

Group interviews 

Care should be taken to ensure all participants can contribute to group discussions and are not bullied, intimidated or belittled. Participants must be told what will be expected of them when they agree to participate. This includes any physical exercise or anything unusual that may be required.

Recognising vulnerability 

To recognise a vulnerable person and their needs, practitioners developing proposals and collecting data should consider if members of the research team know how to recognise vulnerability and deal with vulnerable participants. This includes how to react if any abuse or serious crime is revealed during the data-collection process. The research team should receive specific training ahead of the project and be periodically assessed on their understanding of any guidance.

If the topic of the data collection is sensitive – and it is known, or likely, that some or all of the participants are potentially vulnerable – ensure that support materials and helpline numbers are available for participants. It may be helpful to contact a relevant support group or charity for their advice on specific areas before starting the project, to help identify any potential issues.

Back to data protection

To ensure transparency, the Data Protection Act 2018 requires individuals to be informed about the collection and use of their personal data; this is commonly contained within a privacy notice. The information given in the notice must be concise, transparent, intelligible, easily accessible, and it must use clear and plain language.

Think about the intended audience for the privacy information and put yourself in their position. It is particularly important to ensure that the privacy notice – and the wording used to seek permission to take part in a project – is tailored for the participants involved. Using language that is clear and easy to understand helps inclusion and encourages people to take part in data-collection projects, now and in the future.

This article was first published in the April 2020 issue of Impact.