The International Federation of Pharmaceutical Manufacturers & Associations (IFPMA) has launched a set of Data Ethics Principles to guide the pharmaceutical industry on best practices for using data responsibly and sustainably.
While the IFPMA is not strictly applicable to pharmaceutical companies as a matter of law, the principles may prove useful for pharmaceutical companies as a reference point for navigating the increasingly popular use of artificial intelligence and big data in the healthcare industry. Members of the Singapore Association of Pharmaceutical Industries (SAPI) may also do well to follow the Data Ethics Principles insofar as SAPI is itself a member of the IFPMA.
In more detail
The IFPMA represents pharmaceutical industry associations and companies from both developed and developing countries. Its newly launched Data Ethics Principles cover all types of data used and processed by pharmaceutical companies, including patient data, healthcare professional data and employee/business partner data. It stresses the importance of taking into account the impact of data use on individuals and how it lines up with human values, risks and benefits.
Forming the foundation of ethical decision-making are seven proposed principles:
- Autonomy – Respecting individual’s privacy, ensuring their rights are protected and honouring confidentiality obligations.
- Transparency – Ensuring that individuals can understand how their personal data are being used.
- Data quality – Companies should use the best quality data available for any decision-making.
- Fairness and non-discrimination – When acquiring data, companies should seek to be inclusive and equitable and strive to respond to the needs of all patients.
- Ethics by design – Safeguards should be built into the design of data architecture and data processing to protect against harm and risks to individuals.
- Responsible data sharing – When sharing data, companies should consider, prioritise and protect individual rights.
- Responsibility and accountability – There should be effective governance, clear standards, training, monitoring of activities and disciplinary sanctions.
According to the IFPMA, these principles are but the starting point for member companies to evaluate their internal processes and policies on ethical data handling. It emphasises that exercising data ethics is an ongoing effort and that companies should routinely reevaluate their data ethics programs in light of developments in technologies and applications.
Full details of the Data Ethics Principles may be accessed here.