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I confess to have been unsure whether the concerns of Europeans on integrated community care and support would resonate across the pond. How would these translate into the different political environment and service structures of modern America?

Since the start of the pandemic we have been closely working with colleagues from the American Public Health Services Association and Stewards of Change to discuss different ways in which our systems of support care for the most vulnerable in US and Europe. Within this conversation, themes related to the workforce and digitalisation particularly stood out. In this context, I was invited to speak at an event at HIMSS, the largest digital and health summit in the United States.

Realising the vision of whole person care requires a system approach that overcomes the current patchwork of siloed programmes and agencies utilising all possible policy drivers, amongst them consent management, particularly in the current era of digital care and support. Addressing the challenges of informed consent for sharing protected data, system interoperability and care coordination was the focus of the seminar I spoke at, where I highlighted some of the key issues related to informed consent in Europe.

Though it originates in healthcare, the concept has always been prominent in social work and is consistent with the long-standing social work principle of people’s self-determination. Indeed, informed consent procedures require social workers to obtain clients’ permission e.g. to share their information with other professionals, to have conversations recorded or to have them involved in certain interventions. Therefore, informed consent issues may arise when social workers deliver services to people including children, older adults, people with mental illness and physical challenges, or nursing home residents.

Legislations vary in standards, understanding and applications, but several criteria must be considered. Therefore, to illustrate this, I selected a couple of European examples related to the implementation of data protection and its impact on care and support in Europe particularly considering changes brought about by GDPR data legislation in 2018.  

GDPR requires a large set of information to be provided to people about the personal data that is being processed. This could be a challenge, particularly for those working with services for children. There are additional layers of complexity, for example differing ages of consent and ensuring that there are child friendly explanations regarding consent for data sharing.

As an example, due to safeguarding reasons social services at local level are frequently required to share personal data with other public services such as health, education or the police. The organisation that is responsible for collecting the data is required under GDPR to explain clearly who may access their data and why. Childrens Services need to explain this to the child and those with parental responsibility. For that reason, it is important to gain informed consent early to be able to process their data. GDPR makes it very clear that consent must be unambiguous, explicit and recorded. Therefore, case workers must record how the consent was obtained as they may need to show an audit trail.

The person may refuse or withdraw consent. Therefore, case workers will need to determine the capacity to make a decision to provide or refuse consent. How can this be done? It is important not to make assumptions based on age, disability, appearance, behaviour, medical condition or beliefs.

For this, it may be necessary to have in place a capacity assessment and professionals need guidance on when a person’s decision-making capacity may be questioned. It is important that capacity assessments are inclusive of multiple expertise, also to address possible disagreements between professionals themselves.

Likewise, the use of digital tools has accelerated the number of ethical challenges regarding social work concepts of people informed consent, privacy and confidentiality, and practitioner competence.

While some researchers have argued that e-social work involves threats against privacy and confidentiality, others have also highlighted tensions affecting the case worker-client relationship. For example, on the one hand, clients can record meetings with their social worker without their consent, to resist the power imbalance within the relationship. On the other hand, social workers sometimes consider it acceptable to use social media to gather information on their clients.

During the discussions, US colleagues highlighted how a ‘systems’ approach is needed to change perspective and move from a systems thinking to a systems practice where organisations adapt to bridge silos. It was acknowledged that sharing social care information is different from medical data yet there is a need of using standards to make data-sharing within and across silos interoperable. Technology can help facilitate whole-person care and if well-used security technology can protect information transactions from unwanted interception. But it is necessary to have in place guidelines that enable jurisdictions to more rapidly replicate and customise consent solutions to their specific needs.

It is important to meet these requirements as informed consent is probably one of the clearest expressions of social workers’ respect for people’s rights to self-determination, autonomy and social inclusion. A theme which is increasingly addressed in the context of technology, hence this year’s European Social Services Conference will focus on how technology promotes autonomy and inclusion, and within this broad theme the question of ethics will be significantly discussed in the different panels and sessions. And you are all invited to attend.