Our policy on sharing patient stories
What we believe
Genea believes that the sharing of stories about individuals’ experiences with infertility and journeys towards parenthood (and the challenges along the way) is an important source of support to others dealing with the same circumstances. We know that issues like difficulty conceiving, the realities of IVF treatment, and miscarriage, can be stigmatised, and sharing stories about these experiences reduces stigmatisation and helps individuals to heal from grief. Of course, as custodians of our patients’ most personal information, we also absolutely respect the right of patients to keep this information private. What is important to us is offering patients free choice to make decisions about these matters themselves, based on their individual values and preferences.
The role of storytellers for our community
From time to time, to support the community of patients, past patients, prospective patients and non-patients who visit our website or social media pages, we may facilitate a patient or family we have assisted to choose to share their story on one of these platforms. Where a media organisation wants a real life example of a new development or other issue affecting IVF services, we may facilitate an interview with patients who have lived experience with the relevant condition, challenge or new service/technology. We call these individuals ‘storytellers’.
We also recognise that patients may also or alternatively choose to share their story in an external forum such as a support group, chatroom or their personal social media accounts, and we support the right of patients to do so.
Laws about ‘testimonials’
Australia has laws prohibiting the use of ‘testimonials’ in advertising for health care services¹. Many people find this surprising because the use of testimonials is widespread in Australia – for example, a study in 2017 found that 70% of dentists’ Facebook pages contained testimonials². In basic terms, a testimonial is a positive statement about clinical aspects of a health care service published in a forum controlled by a health care provider or a health practitioner. Statements made in forums that are not controlled by a health care provider or health practitioner are not captured, even if they are positive or endorse a particular provider or practitioner.
Genea seeks to comply with the advertising laws while also facilitating authentic and genuine sharing of stories and experiences within our community of patients and the broader community. In particular, these laws do not mean that negative statements about IVF treatment and outcomes stay ‘in’ while positive statements are ‘out’. It is absolutely appropriate that shared stories encompass a range of experiences from disappointment and sadness to hope and joy – that’s the nature of IVF. Genea’s policy is to be honest, authentic, balanced and transparent in its dealings with storytellers and the stories it publishes.
When Genea publishes or facilitates the sharing of a personal story by a patient or former patient, Genea will first identify (in writing) the particular challenges, experiences or issues which are to be featured in the story – the ‘key issues’ for the story. Examples might include the experience (generally) of having difficulty conceiving, trying to conceive again after miscarriage, infertility and endometriosis, PCOS and similar conditions, the decision to freeze eggs, the experience of the (male or female) partners of IVF patients, or combining IVF treatment with work or childcare commitments.
Genea commits to:
- Only sharing the stories of willing volunteers who are motivated by altruism. Genea will never pressure patients or former patients to share their story. There is and never will be any difference in Genea’s treatment of storytellers and other individuals, and if payments are made or discounts given and it will be fully disclosed.
- Promptly remove any storyteller content from any platform controlled by us if requested to do so by a storyteller. We will also edit out any personal information disclosed inadvertently or which the storyteller later has second thoughts about sharing.
- Identify (or not identify) storytellers in the way nominated by them – eg. using just a first name or pseudonym as preferred (but, if we use a pseudonym, we will keep a written record verifying that the storyteller is in fact an individual who experienced the situation being discussed).
- Select storytellers based first on their willingness to share and second on their degree of affinity and relevance to the key issues being explored.
- Achieve a balance amongst storytellers of individuals who are early in their treatment journey, have achieved a baby quickly, have achieved a baby after multiple cycles and have not achieved a baby. To check that we are being balanced, we will analyse annually as best as we can whether the stories we have facilitated across all platforms and in the media are split across these categories in a way which reflects the proportion of Genea’s patient population who fall into each category at the relevant time.
- Only sharing authentic and genuine stories. We do not script our storytellers. We may supply them with questions, and where we do, we commit to ensuring that the questions are designed to explore the key issues and are not leading questions intended to prompt positive statements about Genea or its services.
- Not utilise storytellers to communicate information of a medical or technical nature which should be communicated by a medical practitioner or other expert. Where required (and after providing an explanation to the storyteller), we will edit out content , which are medically or technically incorect.
- Not to edit out aspects of stories which relate to challenges or negative experiences experienced by the storyteller, even if these reflect negatively on Genea. We also will not edit stories in a way which is misleading by suggesting a better outcome or more positive experience than the storyteller in fact reports.
- Including positive statements about Genea only where the statement forms an incidental part of, and arises naturally from, the storyteller’s discussion of the key issues at hand – that is, where the statement is part of the story. We will not edit content to remove statements of this kind – but we also commit to not capturing such statements and using them outside the context of the storyteller’s story.
- Prior to sharing a personal story on a platform controlled by us (and after any editing) require that a senior member of the Genea team who was not involved in the production of the story reviews the content and confirms that, in his or her opinion:
- The story does not create false expectations of the effectiveness of IVF treatment (at Genea or generally) and, when discussing outcomes, is not positive in a manner which is unbalanced or misleading.
- Any positive statements about Genea or its services which are included arise incidentally and organically from the story being told and are not a major element of the content.
¹ In NSW, the law is found in section 133 of the Health Practitioner Registration National Law (NSW).
² Holden ACL, Spalleck H. How compliant are dental practice Facebook pages with Australian healthcare advertising regulations? A netographic review, Aust Dent J 2018; 109-17