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Crowdfunded cancer care in the UK -An ethical challenge

Rebecca te Water Naudé is a junior doctor working in the Cotswolds with an interest in medical ethics and public health.

Peter Young is a DPhil student at the Ethox Centre and Wellcome Centre for Ethics and Humanities, University of Oxford. He is on Twitter: @Pete_Young_

Cancer treatment in the UK seems to be less successful than in other similar countries,1 and treatment delays for cancers across the NHS have been exacerbated by the pandemic.2  If patients seek treatment options outside the NHS, they must fund these out-of-pocket. However, since most people do not have cash reserves set aside for this, they increasingly choose to use the internet to crowdfund. This process is not without potential ethical issues.

The state of play: Cancer treatment in the UK

Population-based studies have compared cancer outcomes between countries and showed that the UK, while improving, still lags behind other similarly developed countries in terms of cancer mortality, especially for lung, pancreatic and colon cancer.3 Furthermore, the British public is increasingly less satisfied with the services provided by the NHS.4 Combining this dissatisfaction with the shortcomings of cancer treatments available to them, it is not surprising that some patients seek alternative options to manage their cancer diagnoses.

The basics of crowdfunding 

Crowdfunding offers people agency – whether it sponsors individuals for a sporting event, pays for a legal battle, or in this case, funds a medical treatment.

Crowdfunding is defined as raising a large amount of money by collecting multiple small donations from altruistic donors. Crowdfunding for medical treatment is an increasingly popular method to finance healthcare-related expenses,5 and within this, crowdfunding for cancer care has gained considerable traction in recent years.

Crowdfunding offers people agency – whether it sponsors individuals for a sporting event, pays for a legal battle, or in this case, funds a medical treatment. It allows individuals to take rapid charge. In a few minutes, anyone with an email address can set up an account on a crowdfunding platform like GoFundMe.com or JustGiving.com. For medical goals, neither authentication by a clinician nor proof of treatment by a medical establishment is necessary. Fundraisers’ donation pages can contain their campaign ‘story’ and fundraising goal, whilst sharing updates with donors. Over the past few years, crowdfunding campaigns have been increasingly used to finance the treatment of patients with cancer.6 As this method of healthcare finance becomes more popular, several questions arise about how ethical this process is.

Could crowdfunding challenge patient autonomy?

When UK patients crowdfund for cancer treatment, they do so typically to travel away from the British system,and this has implications for patient autonomy. Patients who receive treatment in unfamiliar settings may not be fully informed about those treatments, especially where outcomes may not be reported. Not having material information about treatments and outcomes questions whether patients can provide an informed consent.

Respecting patient autonomy relies upon patients being provided with sufficient, understandable information and having the capacity to make a decision. However, there is no obligation for clinics abroad or crowdfunding campaigns to detail the treatment an individual will receive. If available information about treatments that are paid for by crowdfunded campaigns is unclear, disputed, or not available to the public, patients may have insufficient information to make a good decision.5 Their consent may therefore not be informed. When patients are unaware of treatment options, they might also not understand the true financial implications those options. They may be led towards financially unstable positions, leading to further harms; for example, there are reports of patients having to sell their homes to finance crowdfunded treatments.7

Accessing treatments abroad can be further problematic since an estimated half of cancer treatments accessed as a result of crowd-funded campaigns are complementary and alternative medicines.8 While a patient  usually cannot be prevent ed from travelling abroad for treatment, patients accessing these treatments might create expectations for other cancer patients in a similar situation and unwittingly spread false information about the effectiveness of alternative medicines.8

There are other ways that treatments abroad might disrespect patient autonomy. Health care systems abroad may have different regulation and medicine licensing rules when compared to the British system to which patients are accustomed.9 Standards across the British system are regulated by the Care Quality Commission, and treatments approved as cost effective by the National Institute for Health and Care Excellence (NICE). Patients who crowdfund for cancer care may be vulnerable simply because they are abroad and powerless in a different, unfamiliar healthcare system.10 Interviews suggest this can result in cancer patients being coerced into treatments offered by private clinics, who may publicise and popularize treatments that lack an evidence-base accepted in the UK.7 Any situational pressure placed on patients while abroad could lead to duress, and this could disrespect patient autonomy, especially where patients make choices about treatments that do not fall in-line with their values

Some understandings of autonomy posit that patients have the right to make non-ideal decisions so long as they understand the material information surrounding that decision and are doing so freely, without pressure. As demonstrated above, however, there is a lack of credible information about prospective treatments, and patients might be placed in a vulnerable position when making decisions. We therefore question whether patients are able to provide informed consent here.

Crowdfunding poses a challenge to equitable access to healthcare

Another issue arises when considering the ethics of crowdfunding for medical care – not all campaigns are created equal. While anyone can create a campaign and fundraise, certain factors have been shown to make crowdfunding campaigns more likely to reach their goals: the quality of social networks surrounding the recipient, the ability of the campaign recipient to tell a persuasive narrative, and the amount of information given on the campaign web page. Differences with these factors between prospective patients could encourage unequal distribution of resources, which has implications for justice and fairness across society more widely.

Crowdfunding campaigns are inherently linked to the social network of the campaigner. Successful pages are more likely to belong to people of higher social status, with more internet or real-world connections.11 Pages tend to benefit from donors of the same socioeconomic class as the recipient, which results in the distribution of crowdfunded wealth not necessarily following a meritocratic pattern that benefits those with the greatest medical needs.12 The way a fundraising page is written portrays patients in different ways: this affects which campaigns meet their fundraising goals. Narratives describing recipients as community-minded and brave have been demonstrated to be more successful in reaching their fundraising goals than those with a more pessimistic outlook.12 Some campaigns aim to create a community by asking for thoughts and prayers, cultivating a sense of community around a campaign.8 Those individuals sufficiently educated to write a narrative like this may be better placed to receive funding. The NHS has a constitutional duty to wider society to promote equality,13 but crowdfunding campaigns work outside of this system. Therefore, crowdfunding campaigns may perpetuate and reinforce societal and health inequality.

…patients who crowdfund and travel to other countries are not subject to audit or data collection. It is less likely their treatment regimens will be clearly recorded with patient data subsequently made available.

Another justice-related issue might occur due to how treatment outcomes are recorded. One result of integrating the NHS into British society is that data about illness and treatment is collected from all patients who use the NHS.14 This monitors the efficacy of current and emerging treatments, which is used inform future evidence-based decisions and thus benefits cancer patients. Where treatments are unavailable to the general public, the NHS has created a Cancer Drugs Fund (CDF) in an attempt to rectify inadequacies in its cancer treatment offerings. The CDF receives applications from patients who would like funding for a specific treatment currently unavailable via the NHS, and this fund allocates funding by taking into account the known evidence about prospective treatments and cost effectiveness.15 If successful, the regimen and outcome is recorded, resulting in data being collected and decisions about whether a treatment should be made available more widely on the NHS. Unlike these two initiatives, patients who crowdfund and travel to other countries are not subject to audit or data collection. It is less likely their treatment regimens will be clearly recorded with patient data subsequently made available. Therefore, patients who crowdfund for treatments in other countries may be a lost source of important medical information, which could have informed patient care. This goes against public good.

Therefore, while the processes in place currently aim to benefit society and equalise care, the process of crowdfunding to receive cancer treatment elsewhere disturbs this. It allocates a large amount of money in a seemingly arbitrary way without recording outcomes that could inform future practice and benefit the wider population.

How can we prevent harm from crowdfunding for cancer care?

Should GPs find out their patients are thinking of crowdfunding, it would be responsible – and GMC guidance might suggest GPs have a duty – to discuss the differences patients may experience…

Given the exponential increase in funds raised by crowdfunding for cancer care, primary care can play an important role in making patients aware of the potential drawbacks of using crowdfunding. Many GPs already check in with their patients experiencing cancer diagnoses and making treatment decisions. It is likely difficult to predict those who may choose to crowdfund. Should GPs find out their patients are thinking of crowdfunding, it would be responsible – and GMC guidance might suggest GPs have a duty – to discuss the differences patients may experience in other healthcare systems, alongside the likely financial and personal implications of crowdfunding campaigns.

More widely, we suggest that a public campaign (by the state or a charity perhaps) informing cancer patients of the drawbacks of crowdfunding for care is a low-resource way to inform patients of these same risks. This campaign would have the scope to target patients newly diagnosed with cancer, or those with treatment-resistant forms of cancer who are searching for other options. This could prevent individual harm: not only protecting patients’ health but also preventing confidential information from being posted online unnecessarily.

Given the increase in popularity of crowdfunding, systemic change may also be necessary, and websites hosting crowdfunding campaigns have a role in this. A recent report in the BMJ suggested the practice of crowdfunding for alternative treatments should be halted. The Good Thinking Campaign wants crowdfunding platforms to vet cancer appeals and prevent crowdfunding for alternative medicine.4 As of writing, this has not yet taken place.

Systemic change could also take the form of better regulation for the Cancer Drugs Fund (CDF). Satisfaction with this system is low, and the flaws of its decision-making are well-documented.9,16 By utilising crowdfunding, if a patient is sufficiently determined and socially connected, they may be able to receive a treatment regardless of its review by NICE and the CDF. Clearly, this is not in-line with the principles of the NHS.

Conclusion 

The increase in crowdfunding for cancer care over the past five years shows no sign of slowing. We do not think that crowdfunding of itself is unethical – donors are free to give and recipients to spend. However, there are ethical challenges surrounding the way crowdfunding campaigns are used to facilitate treatments not conventionally accepted. The implications of crowdfunding include thinking about how these campaigns may affect the autonomy of patients as well as wider equality of access to healthcare. The discussion and solutions presented above could help support those patients and their families who already experience the difficulty that comes with a cancer diagnosis.

References

  1. Dayan, M., Ward, D., Gardner, T. & Kelly, E. How good is the NHS? Nuff. Trust (2018).
  2. Greenwood, E., Swanton, C. Consequences of COVID-19 for cancer care — a CRUK perspective. Nat Rev Clin Oncol 18, 3–4 (2021). https://doi.org/10.1038/s41571-020-00446-0
  3. Arnold, M. et al. Progress in cancer survival, mortality, and incidence in seven high-income countries 1995-2014 (ICBP SURVMARK-2): a population-based study. Lancet. Oncol. 2014, 1–13 (2019).
  4. The King’s Fund. Public satisfaction with the NHS and social care in 2018: Results from the British Social Attitudes survey. 1–32 (2019).
  5. Newman, M. Is cancer fundraising fuelling quackery? BMJ 362, 1–5 (2018).
  6. Young, M. J. & Scheinberg, E. The Rise of Crowdfunding for Medical Care. Jama 317, 1623 (2017).
  7. Gellman, L. The last resort? Longreads March, (2018).
  8. Snyder, J. & Caulfield, T. Patients’ crowdfunding campaigns for alternative cancer treatments. Lancet Oncol.20, 28–29 (2019).
  9. Jeurissen, P., Tanke, M., Wammes, J. & Westert, G. International Profiles of Health Care Systems 2017. 113–119 (2017). doi:10.1056/NEJMp0910064
  10. Bell, D., Holliday, R., Ormond, M. & Mainil, T. Transnational healthcare, cross-border perspectives. (2015).
  11. Borst, I., Moser, C. & Ferguson, J. From friendfunding to crowdfunding: Relevance of relationships, social media, and platform activities to crowdfunding performance. New Media Soc. 20, 1396–1414 (2018).
  12. Paulus, T. M. & Roberts, K. R. Crowdfunding a “Real-life Superhero”: The construction of worthy bodies in medical campaign narratives,. Discourse, Context Media 21, 64–72 (2018).
  13. Care, D. of H. and S. NHS Constitution for England. (2015). Available at: https://www.gov.uk/government/publications/the-nhs-constitution-for-england/the-nhs-constitution-for-england.
  14. The National Cancer Registration and Analysis Service. Available at: http://www.ncin.org.uk/home.
  15. Sim, D. Together we will beat cancer The Cancer Drugs Fund : a brief history. Cancer Research UK Science Blog (2018). Available at: https://scienceblog.cancerresearchuk.org/2018/12/14/the-new-cancer-drugs-fund-has-quietly-reached-a-significant-milestone/.
  16. Chamberlain, C., Sullivan, R., Davis, C., Aggarwal, A. & Fojo, T. Do patient access schemes for high-cost cancer drugs deliver value to society?—lessons from the NHS Cancer Drugs Fund. Ann. Oncol. 28, 1738–1750 (2017).

Featured image by Josh Appel on Unsplash

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