First do no harm

Case study by Anna

First do no harm: developing an ethical process of consent and release for digital storytelling in healthcare

Authors

Pip Hardy, Co-founder of the Patient Voices Programme & MMU PhD candidate

Situation

Material

  • The Patient Voices programme provided an informed consent process, technical support, and a safe place for sharing the digital stories.

  • This process has evolved gradually over the years to include face-to-face and video briefing sessions, mailings and phone calls before digital storytelling workshops, ‘veteran’ storytellers at workshops and a set of consent and release forms to support the process and protect storytellers.

Social

  • The tricky balance between protecting safety and security of those sharing stories and their desire to be heard presents a “complex blend of ethical issues” (Hardy, 2015).

  • Fortunately the earliest of these heath digital stories were about two lawyers who understood the relationship between trust, equity, justice and respect and the importance of heath related digital story creation adopting those values (their experience of digital storytelling creation informed the informed consent practices).

Intentional

  • Desire of patients to share their health stories for the purposes of the medical profession learning from them about how treat people respectfully.

  • This desire was partly fuelled by frustration of patients who had seen their stories used selectively by medical researchers for their own purposes and wanted the whole story to be known and unchanged.

  • Intention of the designers to involve the storytellers in every stage of the development of their stories as this is more empowering and gives them control over their finished stories.


The Patient Voices programme designers are facilitators helping patients tell their stories by providing technical and professional support through every stage of story creation along with a process which gives the storytellers autonomy. The designers also provide protection from other stakeholders whose use of the stories might not always value them as whole artefacts.

Task

The Patient Voices programme designers were trying to give patients a voice in their healthcare by helping them capture their experiences in a way which could inform healthcare providers – the programme defined the goals and criteria in consultation with the patient storytellers.


Ownership of the stories has always been a primary focus of The Patient Voices programme to protect the storytellers and give them autonomy over their stories. Therefore, the Patient Voices programme has always resisted the push for control of the stories by sponsoring organisations which may have biased the tone of the stories in favour of the sponsors. The primary goal was to ensure that lived experiences could be revealed so “important lessons could be learned” (Hardy, 2015). Therefore, the stories are always the intellectual property of the storyteller, while the Patient Voices programme has provided the means to reveal those stories.

Actions

Patient Voices programme designers worked with the patients in workshops to help them articulate and develop their stories.


Approval for each stage of the process was sought from the storytellers.


Technical creation of the stories was done by the programme though storytellers had the option to do/contribute to creation if they had the technical ability.


Images or video clips included either belong to the storyteller, belong to Pilgrim Projects Limited or are copyright free/public domain from stock images photo libraries, music is sometimes specially commissioned or is from a library of music licenced by Pilgrim Projects. The stories are released with a Creative Commons licence which specifies no changes (CC BY NC ND). The digital stories are not published on YouTube as the licensing conditions conflicts with the licence and agreement with the storytellers.


The passage of time for the Patient Voices programme has resulted in adjustments to the informed consent process for publishing the digital stories. This has resulted in a more flexible approach, which provides storytellers with the option to withdraw consent at various stages in the story construction process, withdraw a story from the website (rare) or later on give consent to publish in the light of subsequent events or safeguarding issues bringing about a change of mind and circumstances.

Results

The paper does not give data on the impact of the digital stories on medical practice, as it concentrated more on the process of creating the stories, intellectual property, the importance of informed consent and a discussion about the ethical complexities of balancing the potential for good (improving medical treatment) or harm (for storytellers / their families) by making such stories public.


The process and thought that has gone into devising it has been validated by The Royal College of Nursing, several universities, the BBC and the National Audit Office.

Reflections and relevance

It is essential to carefully consider the ethical implications of digital storytelling in healthcare especially regarding respecting and protecting those who have shared their testimonies for the purpose of improving healthcare for others.


Informed consent must be practiced in ways which are accessible to all those who are telling their stories, so needs to be explained and discussed clearly – minimise legal and other jargon and don’t assume that everyone will understand. This means keeping consent forms short and simple (but comprehensive), available in alternative formats (e.g. large print) and discussed with the storyteller before they are asked to sign.


This case study of the issues surrounding digital storytelling resources could serve as a useful resource for our group project. Although our project intends to initially create anonymised scenario digital stories for CPD, the CPD activities may provoke the creation of digital story responses by medical staff, for which they would need guidance on ethical implications and informed consent if they choose to use real people and situations in their stories.

Bibliography

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)