Grainne O’Rourke is our latest interviewee in our Pieces of the Content series, which features discussions with people who have been directly affected by a HPV-related cancer, and professionals, campaigners, scientists, clinicians and researchers who are fighting to have the cancers caused by this virus eliminated forever.
Please introduce yourself and tell us a bit about your work
Gráinne O’Rourke, Head of Communications, Irish Cancer Society. The Society’s work covers the entire cancer continuum from prevention to end of life.
What do you believe are the most effective ways of stopping HPV-related cancer from developing?
In the first instance I think there needs to be more widely available information and education about what are the HPV-related cancers and information about what we know to be their causes. Secondly, I think there needs to be a major focus on the prevention measures available through the HPV vaccine and the innovative nature of this vaccine i.e. the fact that it is one of the first cancer vaccines. Finally, I think the health agencies and NGOs need to radically rethink approaches to social media in the struggle to be heard above the noise created by the fake news era.
What has the relationship between Ireland’s general public and the HPV vaccine been like until now?
When the vaccine was first introduced in 2010, through the existing schools-based vaccination programme, the public welcomed it with open arms, and vaccination rates rose to as high as 87% nationally. Then in 2015, anti-vax sentiment began to dominate the conversation, particularly on social media, and there was a loss of confidence in the vaccine resulting in a drop to 51% in coverage rates in the 2015/16 cohort. Following intensive work by the Irish Cancer Society working in partnership with the HSE (The Irish equivalent of the NHS), the coverage rate for 2016/17 rose to 62%.
What arguments have the anti-vaccine campaigners used to bring down vaccination rates?
The main argument has been the safety of the vaccine and the correlation parents drew between their daughters’ symptoms and receiving the vaccine. In addition, there was a lot of focus on the vaccine side-effects as contained in the Patient Information Leaflet (PIL). Significance was given to the fact that the HSE did not include the PIL in the information sent to parents or available in the schools.
How has the HPV Alliance tried to bring vaccination rates back up (eg what arguments, campaign strategies, have you used)?
In the first instance, before the Alliance was formed, the Irish Cancer Society established the HPV Steering Group with membership from a broad range of interested organisations and groups, including HSE, and set out a plan of action. Realising that the problem was one of communications and not science, we set out a short-term communications plan centred largely but not entirely on social media. Up to then social media activity had been largely governed by anti-vaccination sentiment. Then in August 2016 we conducted two public talks in targeted areas where coverage was especially affected (Galway and Cork). These talks included clinicians and patients as well as the pre-imminent virologist Professor Margaret Stanley, who very kindly came from the UK to support our efforts.
The Steering Group maintained a focus on social media and dissemination of factual information throughout 2016/17, including improvements to the HSE HPV material. In August 2017, the HPV Vaccination Alliance was formed with 37 health, special interest and civic society groups signing up to a Contract Against Cancer. In addition, HSE Comms made a significant investment in video advertising online involving younger voices of support for the vaccine.
What has the effect of the Alliance been on the rates of vaccination?
The results of all this work since July 2016 has been an increase in rates for 2016/17 from 51% to 62%. This is a great result but obviously there is no room for complacency, as there is a new cohort of eligible girls entering secondary school every September. So the work continues.
What has the general response to the Alliance been like?
I should say it has been excellent given the increase in rates. It has made it more difficult for misinformation to take hold given the calibre of the organisations involved.
There are lots of positive sounds around a gender neutral HPV vaccination programme coming to Ireland. How do you feel its implementation will help achieve the Alliance’s aims?
At the moment the Health Technology Assessment (HTA) is still underway and the public consultation phase closes on Friday September 7. Therefore, I don’t want to pre-empt any recommendations of the HTA but the signs are promising that a universal programme would be introduced in September 2019.
What have you learned since the formation of the Alliance, and what tips would you give to any other country with low HPV vaccination rates?
This is not a problem of science, this is a problem of communications. All relevant stakeholders need to create information that is clear and straightforward emphasising the safety and efficacy of the vaccine. Social media channels are essential and video material has been found to be very effective. Find advocates among young people themselves, in addition to those women who have or have been through a cervical cancer. In addition, it’s important not to allow the anti-vaccination lobbies to gain a foothold in the various information streams. Do not be afraid to speak out for what’s right and scientifically proven to save lives.
Any final thoughts – anything we haven’t covered that you would like to mention?
If a country currently has good coverage rates, don’t get complacent. Be vigilant for trends in anti-science activity and avoid the paternalistic approach that has been in some measure responsible for creating the downturn in coverage.