Design Pattern -
Embedded informed consent

Embedded informed consent

Name

Embedded informed consent

Authors

Pip Hardy, Co-founder of the Patient Voices Programme & MMU PhD candidate, reviewed by Anna Page

Summary

The act of embedding informed consent practices into digital storytelling for patient care CPD aims to draw attention to the ethical considerations of creating and using digital stories about prisoner patients for hospital staff CPD purposes.

Illustration

Problem

Providing CPD for medical staff which informs and engages them in the experiences of prisoner patients to increase empathy and improve patient care needs to include embedding the practice of seeking informed consent into the process of collecting the stories. This is an opportunity to draw the attention of medical staff to the ethical considerations surrounding both the creation of digital stories which illustrate prisoner patient experiences and the need for equitable, empathetic patient care which builds trust, dignity, and respect.

Synopsis

How to improve clinical and non-clinical staff empathy and understanding of prisoner patient care while protecting the autonomy and dignity of the patients by seeking their consent to share their experiences so they are not misused (such as extracts taken out of context).

Forces (optional)

As explained in the case study by Pip Hardy, it cannot be assumed that every storyteller is literate enough to understand complex legal and other terms on consent forms or can see well enough to read them, nor should it be assumed that they would want their stories to be anonymous. To uphold the integrity of the stories and instil trust in the process means storytellers must be involved in every stage of developing their stories: “seeking their advice, guidance and approval before moving on” (Hardy, 2015). This results in a tension between the need to provide a consent process which protects the rights of the storyteller without making it incomprehensible and off-putting with jargon.

Context

The context of story creation for prisoner patients is likely to be in the prison environment during facilitated digital storytelling workshop sessions.

The context of using the digital stories by medical staff is probably in hospital settings (perhaps a hospital library or computing equipment in their working space). There would be a requirement to complete mandatory training which includes the prisoner patient digital stories, but the creation of their own digital story responses would be optional.

Origins

Material

Prisoner storytellers may be constrained by their prison environment regarding access to technology to self-create digital stories. Therefore, creation of the stories will probably involve working with a facilitating designer who records the story (video, audio) and helps the prisoner construct it using recording devices, photo libraries and edited video footage, seeking their consent at each stage of story construction.

Medical staff storytellers would use hospital computing devices and their mobile phones to access published digital stories and possibly create their own digital story responses. As for the prisoner patients, they may also need technical and consent support to create and share their digital stories, so the CPD resources would need to clearly articulate what this involves.

Social

Prisoner patients would work with facilitating designers (observed by escorting officers) to create digital stories.

Clinical and non-clinical staff would use the online CPD resources on their own and in small groups to discuss ideas plus their responses to the prisoner patient care and ethical issues the stories highlight.

Intentional

Every individual would have different beliefs about treatment of prisoner patients, with some biases and prejudices about prisoner rights to dignified and equitable treatment. Some may therefore not see the value in informed consent to create and use digital stories.

Solution

Provide a series of consent forms and processes to use at various stages which support the explanation of how the digital stories will be used, licensed, and shared.

Build into the CPD resources for medical staff suitable activities about the process of seeking informed consent. This will demonstrate the importance of consent for creation and use of digital stories in healthcare settings and help raise issues of equity and dignity for all patients.

Pedagogical aspects

Constructivism (constructing meaning through experiences, reflection, and social connections).

Learner-centred approach to learning:

• in which the prisoner patients are involved in the creation of their stories with the knowledge they will be used by clinical and non-clinical staff to inform improvement in prisoner patient care.

• In which hospital staff are prompted to reflect upon digital stories about patient experiences of healthcare, construct their knowledge and inform practice improvements through peer discussion, and optionally construct digital story responses which embed informed consent.

Technical aspects

Digital literacy, IT hardware to access the resources and sufficient time allowed for CPD are all requirements for successful utilisation of digital storytelling.

Related patterns (optional)

Embedded informed consent processes in digital storytelling is the antithesis of dark designs implied consent practices adopted by some websites to “deliberately hide information” (Interaction Design Foundation, 2020).

Examples

Hardy’s paper features two case studies in which the refined informed consent approach used by the Patient Voices programme resulted in a positive effect for the story tellers. One highlighted the value of time to reflect on an initial decision to not publish the digital story and the other highlighted the crucial matter of safeguarding the storytellers, giving them the choice to not publish a story for their own safety (the example was about domestic abuse digital stories). These safeguarding stories indicated the value to the storytellers of participating in the process of telling their stories and how it had given them courage, skills, and ultimately also complete autonomy over the choice about sharing their stories.

Data and References

Hardy, P. (2015). First do no harm: developing an ethical process of consent and release for digital storytelling in healthcare. Seminar.net,11(3). Retrieved from https://journals.oslomet.no/index.php/seminar/article/view/2345 (accessed 4 June 2021)

Interaction Design Foundation (2020) ‘Reduce the Likelihood of Rejection with Implied Consent’. Available at https://www.interaction-design.org/literature/article/reduce-the-likelihood-of-rejection-with-implied-consent (accessed 9 June 2021)

Bibliography

Patient Voices – Insight through first-person stories… http://www.patientvoices.org.uk/

Image attribution: Stock photo clipart Informed Consent