The Human Papilloma Virus (HPV) causes cervical cancer. In line with the latest scientific evidence the New Zealand National Cervical Screening Programme (NCSP) plans to change from cytology-based screening to HPV testing as the primary screening to prevent cervical cancer utilising intrusive clinician sampling, with HPV self-testing as an option. Many questions remain about this new screening pathway for Māori.
He Tapu Te Whare Tangata: Exploration of the Cervical Screening Clinical Pathway is a Cancer Society-funded Kaupapa Māori research (by Māori, with Māori, for Māori) study, that aims to fill the knowledge gaps around HPV self-testing. Several questions were identified during the team’s Health Research Council-funded randomised controlled trial (RCT) that tested the uptake of HPV self-testing among under-screened women in Te Tai Tokerau (Northland).
This qualitative sub-study aims to develop an in-depth understanding of the entire HPV self-testing clinical pathway for under-screened women, including - the usability of the HPV self-test, referral procedures, colposcopy experiences, whānau/family and other support, feelings about the test and pathway, and recommendations. This involves in-depth interviews with women who decline the HPV self-test, women who accept the HPV self-test and receive a negative result, and women who accept the HPV self-test and are referred to colposcopy following a positive result. Clinicians involved in the RCT have also been interviewed. Understanding women’s journeys will be critically important to inform future NCSP policy and practice.
New Zealand’s National Cervical Screening Programme (NCSP) has decreased overall cervical cancer morbidity and mortality but has not provided equal success for Māori, who are two times more likely to be diagnosed with cervical cancer and almost three times more likely to die from this preventable disease.
Scientific/technological innovation provides an opportunity to address these inequities. The Human Papilloma Virus (HPV) causes cervical cancer. Screening for HPV is a more effective way of preventing cervical cancer than cervical cytology (‘smear’) used currently (and has been implemented already in the Netherlands, Australia, and the UK). Importantly, self-testing (self-collecting a vaginal swab) is just as effective as a clinician-collected sample for detecting the virus. This means women can test themselves safely and effectively. Our recent Ministry of Health-funded acceptability study, that gained the perspectives of over 500 never-screened or under-screened Māori women from four regions, showed that whakamā (reticence) was the most common barrier to cervical screening, followed by lack of time, and then cost. Participants expressed a desire for bodily autonomy. HPV self-testing provides the opportunity to support bodily autonomy, as well as being more effective than cytology.
The first part of the title of the study ‘He Tapu Te Whare Tangata’ (the sacred house of humanity) reflects the veneration of Māori women as ‘whare tangata’ (houses of humanity) and the sacredness of the womb (also ‘whare tangata’) from a Māori worldview. The neck of the whare tangata (womb) is the cervix, and this is protected through regular cervical screening.
He Tapu Te Whare Tangata is a body of work that began in 2016, with a Ministry of Health-funded acceptability study that was co-designed with community based-researchers (from two urban and two rural regions), Kaumātua (Elders), the university-based research team, scientific specialists, and members of the National Screening Unit. The Kaupapa Māori distributed research model involved bringing together all these experts to design, implement, and interpret the findings. To collect the data, community-based researchers (all Māori women, well known in their communities) held hui (focus groups) with 106 never/under-screened Māori women and then supported interested participants to become involved in surveying their peers. 397 surveys were collected. Whakamā (reticence) was the biggest barrier to screening.
Of the survey participants 73% said they would do the HPV self-test if offered, and 88% said they would seek follow-up if they received a positive test result (Adcock et al. 2019).
This evidence helped us develop a Health Research Council-funded randomised controlled trial (RCT) that tested the uptake of HPV self-testing among under-screened women in Te Tai Tokerau (Northland). The RCT was developed in close consultation with the participating primary care services, our extended multi-disciplinary research team, and with support of the National Screening Unit. The RCT has been very successful and results will be published soon. During the RCT we discovered that there were questions that the trial could not answer, such as, what are the lived experiences of women offered this different cervical screening pathway, and are there barriers or other issues that we need to be aware of? So we developed this qualitative sub-study, the third piece of He Tapu Te Whare Tangata, and the Cancer Society of New Zealand generously funded it.
This study is still underway, with results expected at the end of 2020. Preliminary findings indicate that HPV self-testing is much easier, more comfortable, and empowering for never/under-screened Māori women (also see Adcock et al. 2019 for results from the acceptability study).
From its inception He Tapu Te Whare Tangata has been a transdisciplinary body of work committed to knowledge translation and transformation of the cervical screening clinical pathway for Māori women to ensure it is community informed and therefore culturally responsive. NSU staff have worked alongside us to help us plan and ensure that our work and their design needs are synchronised, so that the findings of our research can inform change. Similarly, community researchers added their voice from the beginning of the project to ensure that we all worked for the benefit of their communities.
HPV self-testing has the potential to improve access to screening and substantially reduce inequities for Māori.
However, the HPV self-test pathway must be managed appropriately to avoid increasing inequities. This is where we see the need for women-led changes to enhance the delivery, access, and success of cervical screening services.
The Director General of the World Health Organisation (Ghebreyesus, 2018) has called for the global elimination of cervical cancer. To move towards this goal, New Zealand must urgently implement primary HPV screening with HPV self-testing. Originally, the NCSP was planned to change to primary HPV screening in 2018, with HPV self-testing phased in. However, changes have been delayed and a primary HPV screening programme remains unfunded.
These delays will harm women who currently find the screening programme inaccessible. Māori women will disproportionately be harmed.
During the COVID-19 lockdown, screening services were halted, putting women at greater risk of developing cervical cancers.1 As cervical screening services resume, they will need to catch-up with those who were missed and reach women who are coming-up due. The current smear (cervical cytology) involving speculum exam is less effective at preventing cervical cancer morbidity and mortality than HPV screening, and is a high-contact procedure. We call for the immediate introduction of primary HPV screening and HPV self-testing in response to COVID-19, in order to reach more women and prevent more cancers.
Adcock A, Cram F, Lawton B, Geller S, Hibma M, Sykes P, MacDonald EJ, Dallas‐Katoa W, Rendle B, Cornell T, Mataki T. Acceptability of self‐taken vaginal HPV sample for cervical screening among an under‐screened Indigenous population. Australian and New Zealand Journal of Obstetrics and Gynaecology. 2019 Apr;59(2):301-7.
Ghebreyesus TA. Cervical Cancer: An NCD We Can Overcome. In: WHO, Sexual and reproductive health, May 2018. https://www.who.int/dg/speeches/detail/cervical-cancer-an-ncd-we-can-overcome
Written by: Anna Adcock, Research Fellow & PhD Candidate, Centre for Women’s Health Research, Victoria University of Wellington.