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We must take patient data privacy as seriously as we take their health

We must take patient data privacy as seriously as we take their health

This article originally appeared on LinkedIn on November 24 2020.

Although we all hoped for the best, we are again faced with challenging times as progressive waves of lockdown are happening. Alongside the frustration that many people are feeling with the current situation, we are also hearing more about the sense of hopelessness people are experiencing at not being able to support the people we care about.

It is innately human to want to help others; it is one of the fundamental building blocks of a thriving civilization. The COVID-19 pandemic has presented considerable opportunities for people to help others in a unique way: by sharing their health data.

We know that the pharma Industry is working hard to find a vaccine, however, this takes time. Today, it is the contact tracing systems, which use people’s health data, that have one of the most crucial roles to play in controlling the spread of COVID-19 in our countries. Sharing health data is a way in which each individual can play a part in supporting others during this time; but we can only do this if people feel organizations can be trusted with the data they provide.

Trust in organizations today is fragile and to maximize the potential of patient data, we must respect the hesitancy of those who are unwilling to share their health data and work to address the concerns people may have. Historical data breaches in Pharma and other Industries may have fueled this mistrust, and for those organizations who were unfortunate enough to experience this, they now have the increasingly difficult task of regaining the trust of patients and the public, but COVID-19 has given the pharmaceutical industry an opportunity to pave a revised path in the use of patient data, ensuring we take their data concerns as seriously as we take their health.

The pharma industry has a vital role, in this pandemic and in all aspects of health, in developing patient trust, so that not only the individual, but also the wider population can benefit from the transformative effects that data sharing can have in healthcare and research.

Read on for four key reasons why we need data sharing, and why we must improve relationships with people to earn their trust to do so. 

1. Data can help us track and prevent the spread of disease

With traditional methods of health-related data collection and tracking quickly evolving, countries around the globe are adopting digital location tracking to mitigate the spread of COVID-19. We have now seen how crucial patient data is for containing the spread of infectious diseases and is already been used in our race to tackle COVID-19. Symptom tracker apps have allowed healthcare professionals and researches to identify new symptoms and risk factors for COVID-19 and patient immune response data has helped pharma develop drug treatments and vaccines to tackle the virus.

2. Insights can support medical and scientific research

Patient insights are an incredibly valuable in medical and scientific research, helping tailor it to the areas of focus that will have the greatest positive impact on patients and healthcare systems. Using real-world patient evidence allows us a more wholesome and realistic picture of how treatments are working beyond the confines of clinical trials. Yet the potential of real-world evidence has not been fully harnessed even though it is a key part of our goals in moving towards a more holistic, value-based healthcare model for patients. Real-world data is helping us make collaborations with patients that will evolve how we conduct research, producing solutions on what matters most to the patient.

Janssen collaborates in the harnessing of real-word data as part of HONEUR (Haematology Outcomes Network in Europe), a partnership of universities, hospitals and institutions across Europe, which compiles real-word data on more than 13,000 individuals with haematological malignancies, to deliver better treatments and outcomes that matter to those patients. The data made available through this network is fully anonymised and it is explicitly stated that its partners and objectives are aligned in making it clear that it respects individual rights and follows all local processes and regulations, e.g., FAIR and GDPR.

3. A source of big data

Big data can generate valuable insights that can help pharma understand the intricacies of an individual patient’s journey, helping us piece together a tailored approach to their care. At the rate tech is advancing, we are increasingly reliant on big data to create future opportunities to help patients. For example, Janssen is involved in the three-year MELLODDY (Machine Learning Ledger Orchestration for Drug Discovery) project – which aims to increase efficiencies in drug discovery by training machine-learning models. It is also involved in the BD4BO (Big Data for Better Outcomes) research programme which is harmonising and analysing data to focus on delivering advances in the treatment and management of Alzheimer’s disease, cardiovascular diseases, prostate cancer and haematological malignancies.

We must not forget though, that no matter how useful patient data is, it can only be used if patients' privacy concerns are addressed.

4. Improving patient trust around data sharing

A recent study on altruistic data sharing indicated that over 71% of people would be willing to donate their data if it would benefit themselves or at least 10 people near them. However, some individuals have demonstrated a reluctance to share personal health data as part of public health measures to combat COVID-19. In another study, only 53% of consumers stated they would make their personal data available if it helped to monitor and track an infection cluster. This is problematic, as track and trace programs cannot effectively contain the virus if only a slim majority of people are willing to share their infection status.

Patients who contribute their data to healthcare research want to know that their data is going to be used to their benefit, or the benefit of other patients. Therefore, patients must be given the opportunity to understand how their information is being used and by who, so that they are able to make informed decisions and communicate their thoughts and concerns before they opt in to sharing their data.

If we are able to show that we are listening to the patient and effectively communicating our objectives, then they are more likely to want to share their data with us.

There is still vital work that needs to be done to bridge the gap in communication and trust between pharma and patients, but the time to grow that trust is now; when the alliances between patients and organizations, such as pharma, are needed the most to overcome the biggest public health crisis in a generation.   

It may be too early to tell if the public perception and attitudes towards sharing health data have changed as a result of the pandemic, but one thing is clear − the only way we will be able to unlock the true potential and value of patient data for disease monitoring, research and drug development, is if we listen to the concerns of patients and treat their data privacy as seriously as we treat their health.

Has your perception towards health data sharing changed, and if so, how?