Cancer World has recently published an article “Math models for medical decision-making: a double-edged sword”. This article asks: “In the golden age of computing, both the present and future of medical decision-making seem to depend on new mathematical models and systems built around artificial intelligence (AI). But how will doctors and patients feel about using (and trusting) them?”

PREDICT is an online prognosis tool that was created to help doctors and people with breast cancer make informed decisions about treatment following breast cancer surgery. If the health professional enters information such patient age, tumour size, and tumour grade, the tool can estimate the chance of survival, and the benefits of treatment with hormone therapy and chemotherapy. Similarly, Adjuvant! has been developed to help health professionals estimate the risks and benefits of people with early cancer receiving additional therapy after surgery. However, a recent study into both of these tools, published in the European Journal of Cancer, revealed that these tools were only accurate for the “average patient” with average survival rates, and was not as accurate for people with very high or very low probabilities of survival. Currently, the Adjuvant! tool is being modified and is not recommended for clinical decision making.

According to Kathi Apostolidis, Vice-President of the European Cancer Patient Coalition (ECPC), “Patients are not very familiar with these types of tools. What is more, they often don’t have the specific information which they request. They need warranties that they are safe, assure their privacy, reliable, efficient, concrete and evidence based. Moreover, there is no regulatory framework for developers of medical apps that enables health systems, physicians and patients to trust them. Who certifies that they are safe and reliable?”, she questions.

Kathi Apostolidis was a member of the European Commission’s Working Group on mHealth assessment guidelines, which concluded in 2017. While no consensus was reached amongst the represented constituencies on a set of guidelines, the Group allowed for valuable exchanges captured in a report summarising the process and the positions from the represented stakeholders. In this report, it is stated that “In order to build user/patient/Health Care Professional trust in an app, evidence of studies, trials etc. where relevant should be referred to. As a minimum, the app needs to be evaluated against any claimed health benefit or improved health outcome”.

The European Cancer Patient Coalition welcomes the European Commission’s proposal to draw up an industry-led Code of Conduct on mobile health apps, covering the topics of privacy and security. The objective of this code is to foster citizens’ trust in mHealth apps, raise awareness of and facilitate compliance with EU data protection rules for app developers. The final draft of the Code of Conduct on privacy for mobile health apps has been formally submitted for comments to the Art 29 Data Protection Working Party, that published its comments on the draft in April 2017, and identified areas of improvement before it is approved. Once approved as per the suggestions proposed in April 2017, by this independent EU advisory group, the Code will be applied in practice. Till that time app developers will be able to voluntarily commit to follow the rules set in the final draft of the Code and the suggestions made by Art 29 Data Protection Working Party.