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8th March 2022

Fairness: a blog in honour of International Women’s Day

DATA-CAN Patient and Public member, Jacqui Gath, blogs in a personal capacity this International Women’s Day on women’s health and data research.

In my previous blog, Fairness: the importance of diversity in health data for creating better fairer treatment for all, I wrote about the importance of data diversity in healthcare research and steps that can be taken to address inequalities.

Now, in honour of International Women’s Day 2022, I would like to share some considerations about women’s health and the impact of data research. 

Women’s health does not just include the female specialisms of pregnancy, obstetrics, and gynaecology. It also includes the fairness of resourcing, the fairness of prevention of disease, the fairness of adequate pain relief and many other aspects of ‘fairness’. The ‘fairness’ of equal selection of research participants and the collection and analysis of data is one such aspect. Is a study an ethical study if it does not do these things?

Does being a woman mean it’s all in your head?

The fairness of consideration. For example, the JAMA Network reported that in reports of long-Covid, women outnumbered men by four to one. Yet one of the contributors, (Dine: MD, a pulmonary specialist at the University of Pennsylvania Perelman School of Medicine) reported that “There is definitely gender bias.” Women with persistent symptoms are more likely than men to be viewed as, “dramatic and anxious” and, as a Covid long-hauler (Lockman) reports, “We’ve experienced so much medical gaslighting, basically doctors telling us, ‘That’s not what you have. It’s just anxiety.’” Lockman. (1)

“One thing that’s clear”, Miglis (Stanford University neurologist) said, is that “these mystery diagnoses are real, and they’re not just in patients’ heads.”

Well, that’s a relief!

Anecdotally, women are sometimes told that their symptoms are in their imagination, or due to age, and other female factors. How often does this happen, where patients reporting symptoms of cancer are told it is imagination or stress? (2) Or there is a reluctance of a physician to refer a female patient to secondary care because her symptoms are not those experienced in her age group, such as happened with Jade Goody and cervical cancer?

Prevention of HIV: only for men?

Disease prevention is as important for women as for men, especially when talking about infectious diseases such as HIV. Pre-exposure prophylaxis (PrEP) is a breakthrough HIV strategy. The new PrEP drug Descovy was trialled only in males, not females, because according to Gilead, the manufacturer, “it would have required too many resources to enrol a sufficient number of cisgender women into a trial and closely monitor their adherence to the daily pill regimen.” (3)

A great pity because more than half the estimated 38 million people living with HIV are women and, in some African countries, HIV prevalence in young women aged 20 – 29 is between five and nine times higher than that of men. (4) This study is unfair to women from the design stage. From one point of view, it was not ethical.

Talking women and data

Basically, there isn’t much data. Traditionally, women have been excluded from research studies almost routinely, meaning data about response to drugs is not created, let alone collected. The paper ‘Making pharmaceutical research and regulation work for women’ published in the BMJ in 2020 (5) notes that, “Women have been excluded from pharmaceutical research for many reasons, not least the Thalidomide tragedy.” While one can only applaud that pregnant women are excluded from studies because their children may be at risk of deformity and infirmity, is it also because of higher costs due to female idiosyncrasies? Unfortunately, this leads to the male body being seen as the norm and, in medicine, that can be lethal for women.

There has been much guidance and regulation issued regarding collection and analysis of data and yet disaggregation of data by sex is still unusual. However, Caroline Criado-Perez to the rescue. Her latest issue of ‘Invisible Women blog: One Dose Fits Men’, highlights that women experience far more severe adverse events than men when it comes to cancer treatment. In addition, women have more adverse reactions than men from chemo and also from immune or targeted therapies. This costs the NHS, as more drugs and techniques are deployed to make these side effects bearable.

From the paper, ‘Sex Differences in Risk of Severe Adverse Events in Patients Receiving Immunotherapy, Targeted Therapy, or Chemotherapy in Cancer Clinical Trials’ (6), the authors concluded that, “Few studies have investigated sex differences in immune or targeted therapies. This failure to include sex in the evaluation of risk is”, they said, “surprising, given growing evidence identifying patient sex as a predictor of disease sequelae.”

Yet in some places, the data is there. It is just not used. Perhaps it is time to start analysing routine data.

Where to now?

We have the data, and we now need to disaggregate it by sex and analyse it. We need to mandate this, not make it an option. After all, even men may benefit as they do in the case of glioblastoma (7). Quality of life for female cancer patients might be significantly enhanced by taking more consideration of the differences in response to drugs. It might even be cheaper if women need fewer and less expensive adjuvant drugs to alleviate side effects and adverse reactions.

The important question is, therefore, will the great and good of DATA-CAN, the cancer data hub, take up the challenge of making disaggregation of cancer data by sex, mandatory?

Jacqui Gath is a member of DATA-CAN’s Patient and Public Involvement and Engagement Group.

  1. As Their Numbers Grow, COVID-19 “Long Haulers” Stump Experts JAMA. 2020
  2. Patient told symptoms of ovarian cancer was stress Washington Post
  3. Barring cisgender women from the Descovy trials was a bad call
  4. Young women more affected by HIV than young men in western and central Africa
  5. Making pharmaceutical research and regulation work for women BMJ 27 October 2020
  6. Sex Differences in Risk of Severe Adverse Events in Patients Receiving Immunotherapy, Targeted Therapy, or Chemotherapy in Cancer Clinical Trials Journal of Clinical Oncology, ASCO 4 February 2022
  7. Sex Differences in Glioblastoma Multiforma (GBM) revealed by analysis of patient imaging, transcriptome, and survival data. Wei Yang et al, Science Translational Medicine, 2 Jan 2019