Ethics and Governance

Health and social care is a sensitive domain, and accessing and working with vulnerable individuals and/or where there is the potential to cause harm raises particular ethical and governance issues.

Challenges

Challenges… from User-centred Healthcare Design on Vimeo.

How to get approval for design projects in health that involve deployment/testing of early prototypes, and/or when the exact nature of the final design (‘intervention’) and patients’ and clinicians’ role in devising it is not clear at the outset. Service design is not heath research.

How to recruit co-design participants who may be considered vulnerable? For example: hospital patients. One workshop participant described trying to access young immigrants without documentation (video example), whose participation could put them at risk of deportation. Another workshop participant described working with young men in Salford (street interventions) on the subject of problem drinkers and recognising that they needed additional support and not having the resources to do so.

Privacy issues – patients’ medical data is very delicate to manipulate, share,and communicate. Health services involve intimate and private situations, e.g. “it is a lot about what happens in/on/near the toilet”. And how can we include service-providers experiences in service innovation when professionals are accustomed to keeping these private and confidential?

How could the health service be personalised, when it depends on private and confidential data?

How should designers conceptualise service-users? They are not necessarily customers/clients but they are patients.

How to document contextual research without privacy/ethical violations?

There are some vested interests in sustaining problems rather than ‘solving’ them e.g. drugs companies.

Strategies

Strategies… from User-centred Healthcare Design on Vimeo.

When working with vulnerable participants – dealing with participants anonymously and assessing potential detrimental effects (e.g. of being deported) early, before proceeding.

To pre-empt governance issues – think carefully about how you classify your project (different pathways for different classifications i.e. service improvement, practice development, research).

Take account of how long gaining permission to work in healthcare can take – so you can gain relevant permissions before starting design work.

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