Addressing inequality in bladder cancer care

How can Photocure help uncover disparities in bladder cancer care and outcomes? And how can real world evidence play a part in supporting healthcare equality?

As The Bladder Cancer Company, Photocure is committed to improving bladder cancer outcomes for people equally, regardless of who they are or where they are from. Yet, real world bladder cancer data indicate that there are substantial disparities in quality of care, associated with worse outcomes. Such disparities seem to be associated with geography, race, gender and other factors.

With this in mind, in order to help address inequality in bladder cancer care, Photocure is sponsoring and partnering with multiple external research organizations on the collection and research of real world evidence from large bladder cancer registries.

Multiple analyses and publications from such registries have revealed worrying gaps in bladder cancer outcomes and raised questions over disparities which warrant further investigation.

Clinical trials vs 
real world data


Clinical trials are the gold standard for assessing the safety and efficacy of new therapies. However, differences exist between the outcomes reported from clinical trials and what we actually see in real world clinical practice. One factor to consider is the restricted patient pool used in a clinical trial setting, defined by comprehensive eligibility criteria, and the controlled trial durations.

Other factors include the controlled setting and procedures of a clinical trial. This makes it difficult to generalize findings in relation to larger, broader populations of bladder cancer patients, meaning we are not always getting a clear and generalizable picture of the expected outcomes for “patients in the real world”, or how to best approach their care. Clinical trial outcomes have limitations that need to be addressed by other means in order to progress therapy options. Real world data can complement the findings gained from clinical trials and be more reflective of actual use in practice, providing new insights.

“Clinical trials are the standard and groundwork in all pharmaceutical research. However, they are not always reflective of real world clinical care and outcomes, especially among certain underserved populations. We believe that real-world evidence can help to analyze and address health disparities, improve decision making across the health system and ultimately improve
patient care.”

Anders Neijber, Photocure’s Chief Medical Officer

Various patient databases give us real world insights 
of bladder cancer care and outcomes

At Photocure, our goal is to help bridge the gap between clinical trials and real world outcomes in bladder cancer care. Photocure is partnering with multiple experts, institutions and companies and is supporting several patient databases in multiple countries and regions to gather real world data and research in bladder cancer.  These include:

  • US Blue Light Cystoscopy with Cysview Registry: established by Photocure in 2014 and projected to enroll 4,400 patients
  • Nordic Flexible BLC Registry: established in 2016 and in five participating sites, with data from 500+ patients with blue light procedures
  • The VA Healthcare System (HCS): 1 evaluated 378 non-muscle invasive bladder cancer (NMIBC) patients in an equal access setting for differences in bladder cancer outcomes
  • Transurethral REsection and Single instillation intravesical chemotherapy Evaluation in bladder Cancer Treatment (RESECT): new global multi-centre observational study with randomized feedback to sites2 to conduct a retrospective and prospective, multicenter, international study of urological practice of the management of NMIBC. The primary objective is to determine if audit and feedback can improve the quality of TURBT surgery and reduce early recurrence rates2

Clinical outcomes in bladder cancer are multifactorial, but it’s clear from the literature that social and environmental factors and circumstances play a major role. Health disparities are differences among populations that can be prevented and are driven by several determinants, for example race and ethnicity, age, socioeconomic and disability status, geography, education, and sexual and gender identity.

Findings reported from several real world databases highlight disparities and areas that still need to be addressed in order to ensure more equal outcomes for all bladder cancer patients, regardless of background, race or gender. Some key health care disparities and inequalities that have been reported are:


Some ethnic groups were found to have poorer bladder cancer outcomes than others 

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The California Cancer Registry is an example of how patients from different ethnic backgrounds, in particular black patients have significantly poorer five year disease-specific survival.3 Black patients are less likely to undergo diagnostic evaluations for bladder cancer such as imaging or cystoscopy.4 They are also less likely to receive optimal treatment and have a higher risk of 90-day mortality, according to the National Cancer Database.5 This is consistent with previous studies suggesting that black patients are less likely to undergo surgery, and more likely to go untreated altogether compared to white patients.5

When controlling for age, gender, cancer stage and grade, black race was an independent prognostic factor for poor disease-specific survival.3 Even when diagnosed, black patients receive surgical treatment from less experienced surgeons at lower-volume facilities.3 A higher percentage of black patients use Medicaid and have the lowest incomes, which may be a contributing factor.3

A BLC registry-based study, ‘The Impact of Blue Light Cystoscopy Use Among Non-Muscle Invasive Bladder Cancer Patients in an Equal Access Setting: Implications on Recurrence and Time to Recurrence’ evaluated patients within the US Veterans Affairs Health Care System for differences in bladder cancer outcomes following BLC compared to white light alone. It uncovered that there is no difference in non-muscle invasive bladder cancer by race when given equal access to care.5

It appears race does have an impact on bladder cancer outcomes and the potential reasons behind this, such as access to care, need to be thoroughly investigated and addressed in order to improve outcomes.


“Our findings demonstrate increased support for blue light cystoscopy’s clinical role in improving bladder cancer outcomes, and that equal access to health care can achieve equitable outcomes."

Dr. Steven Williams, University of Texas-Medical Branch, Galveston and VA BRAVO study author


Women with bladder cancer may face less favorable outcomes than men, though more evidence is needed to draw any firm conclusions

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While men may experience higher incidence of bladder cancer, it appears that being female may be linked to poorer outcomes.6 It is reported that women are 2.5-fold more likely to require three or more primary care visits before referral to a specialist than men.7 As a consequence, women are diagnosed with more advanced higher-stage disease and have poorer prognosis.8 Data on 47,182 bladder cancer patients from Ohio Cancer Incidence Surveillance System suggested female gender was associated with worse bladder cancer-specific survival.9 The National Cancer Database also found that women have higher 90-day mortality rates following treatment, while there do not appear to be significant treatment disparities between sexes.5

The Cancer Registry of Norway showed that women have a less favorable prognosis solely within the first 2 years after diagnosis, particularly when diagnosed with a muscle-invasive tumor; parts of this discrepancy can be attributed to more severe initial diagnoses in women.10 Another study found that different technologies can impact bladder cancer outcomes depending on gender.11 Further work is needed to understand more about why this could be.

A Japanese study aiming to examine long-term trends in sex difference in bladder cancer also found that women had poorer 5-year net survival than men for the whole study period – however it also found the risk of death from bladder cancer was higher among men than women, even after adjusting for period at diagnosis, histologic type, stage, age group and treatment.12 Several factors were identified which could explain this gender disparity, for example, the anatomical structure of women’s bladders may be more susceptible to cancer spread, and women may also have a lower inclination to seek medical attention in response to urinary problems.12

Social & Economic Status

When looking at socioeconomic factors, it appears that incomes are linked to outcomes

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Both income and education level are associated with worse survival in bladder cancer. In the US, the National Cancer Database (NCDB) revealed some concerning findings. Uninsured and Medicaid insurance status are the strongest predictors of bladder cancer patients not receiving chemotherapy13 and bladder cancer patients with Medicaid insurance have poorer five year disease-specific survival.3 This is backed up by data from the Pennsylvania Cancer Registry,14 which showed that socioeconomic and insurance status are both associated with suboptimal treatment for muscle-invasive bladder cancer.14

Lower income and lower education were also associated with worse overall survival.15 Additionally, lower income levels increased the odds of diagnosis at an advanced stage, regardless of insurance type. Patients from regions of lower income and education were also less likely to receive treatment and less likely to receive treatment within 12 weeks of diagnosis.15

In Sweden, data from The Bladder Cancer Database Sweden (BladderBaSe) showed how the association between socioeconomic status and bladder cancer survival can be explained by several factors, such as hospital type and comorbidity in non-muscle invasive bladder cancer (NMIBC) and a delay in time between referral and trans urethral resection of bladder tumor (TURBT) in MIBC patients. However these do not fully explain the theoretical causal pathway and future studies should also include the investigation of other possible mediators to help explain this relationship further.16

We must improve on the current situation, where lower socioeconomic groups are receiving less than optimal care. To do so, we need to fully understand the gaps so we can move forward in ensuring everyone involved in the treatment of bladder cancer can help support equal care for all.

We must raise awareness of bladder cancer inequalities as first steps towards greater understanding, and ultimately work towards more equal bladder cancer care

Real world data indicate that a variety of socioeconomic and health-related factors contribute to disparities in bladder cancer outcomes. Furthermore, these findings define and quantify much of what is assumed with regard to disparities in bladder cancer survival.3

Disparities in survival are multifactorial, and are influenced by social and financial barriers to optimal health care delivery.3 Possible solutions to these kinds of barriers may include incentives for urologists to accept Medicaid insurance and to practice in underserved areas.3

We are facing a multifaceted socioeconomic, sociodemographic and public health problem – in short, it’s time to look into the evidence and reduce inequalities in bladder cancer outcomes.1–16

Where can we go from here?

A better understanding of sociodemographic factors and their influence on bladder cancer treatment equips policy makers, physicians, and patients with information regarding available and appropriate treatments for informed decision making.

As well as continued partnerships with external research organizations in order to continue generating new and longer-term real world evidence, further studies and analyses in the bladder cancer area are needed to provide further valuable insights and tangible answers. This in turn can help support equal bladder cancer care for all and allow appropriate decisions to be made, solutions to be recommended and utilized effectively, from education to targeted care by location.

“Photocure sees lots of opportunities to help improve bladder cancer outcomes and to help patients who are currently receiving less than optimal care. The insights derived from real-world data, and the impact these can have on improving decision making and patient care are becoming increasingly important to help address gaps in bladder cancer care.”

Dan Schneider, President and CEO of Photocure

Patient and carer experience is another essential piece of the puzzle when it comes to understanding gaps and disparities in bladder cancer care. Patients struggle with the emotional impact of bladder cancer, carers carry a heavy burden and are often not sufficiently supported, and there is a general lack of pre-diagnosis knowledge and education.17 Understanding and awareness, both in patient and healthcare communities, is another critical step towards improving bladder cancer outcomes for all patients, regardless of race, gender or background. Exploring this further will be key as we aim to support equal care and better outcomes.

At Photocure, we remain committed to optimizing bladder cancer care for all patients and support ongoing efforts to raise awareness, further understand and fight this disease all around the world. This is only the beginning as we move towards our goal of equal bladder cancer care and outcomes for all.


  1. Das S et al. Clin Genitourin Cancer. 2023;S1558-7673(23)00098-8.
  2. Transurethral REsection and Single instillation intra-vesical chemotherapy Evaluationin bladder Cancer Treatment (RESECT) Improving quality in TURBT surgery. Available at: Accessed: November 2023.
  3. Sung JM et al. Clin Genitourin Cancer. 2019;17(5):e995–e1002.
  4. Ark JT et al. J Urol. 2017;198(5):1033–1038.
  5. Marinaro J et al. Urology. 2021;151:154–162.
  6. Densmore R et al. Can J Public Health. 2019;110(6):722–731.
  7. Ghandour R et al. Bladder Cancer. 2019;5(2):119–129.
  8. Ngo B et al. BJU Int. 2017;119 Suppl 5:10–18.
  9. Bukavina L et al. Urology. 2021;151:163–168.
  10. Andreassen BK et al. Eur J Cancer. 2018;95:52–58.
  11. Regmi S et al. J Urol. 2020;203(Supp 4):e349–e393.
  12. Aoe J et al. Cancer Med. 2020;9(19):7330–7340.
  13. Venkat S et al. Clin Genitourin Cancer. 2022;20(2):e140–e150.
  14. Shah AA et al. Urol Oncol. 2022;40(4):164.e17–164.e23.
  15. Weiner AB et al. Urol Oncol. 2018;36(5):237.e9–237.e17
  16. Russell B et al. Cancer Med. 2020;9(20):7477–7487.
  17. Makaroff LE et al. Eur Urol. 2023;S0302-2838(23)02801-4.