If data can help others, please share the data

This is an opinion article by an external contributor. The views belong to the writer.
If data can help others, please share the data

Recently, I had the pleasure of attending the EIT Health Summit in Stockholm, Sweden. Over the course of the two-day Summit, experts from all areas of the healthcare and life sciences sector came together to discuss and debate some of the most pressing questions confronting healthcare systems across Europe.

Unsurprisingly, the common thread was data.

In an illuminating session, CEO of Epilepsy Sparks and a person living with epilepsy herself, Torie Robinson, shared the following:

“Everybody is worried about data security. For us patients and our families, it really does not matter. If data can help others, please share the data”.

Robinson’s plea to the audience to share data to boost patient outcomes is particularly relevant because it reflects the real crux of the issue.

Although it is well recognised that the sharing of data confers many benefits for improving medical research and health outcomes, there is a pervasive reluctance among much of the public to share their healthcare data

In the words of fellow session lead, Bogi Eliasen, the Director of Health at Copenhagen Institute for Future Studies: “Privacy can kill.” Sharing data can save lives.

Studies have shown us that patients are interested in sharing data, but there must be transparency about how their data would be used to incentivise them to share their personal, and sometimes sensitive, information.

Bettina Ryll, Founder of the Melanoma Patient Network Europe, articulated this clearly at the EIT Health Summit. Bettina explained that for patients to hand over their data, there needs to be a clear return value communicated to them and received by them.

While there are significant efforts underway to educate and inform patients and citizens on the importance of data-sharing, including the European Patients’ Forum and EIT Health’s ‘Data Saves Lives’ campaign, we have a long way to go yet in educating citizens and earning patients’ trust.

By communicating how sharing data can lead to improved treatment, for example, we can present a stronger incentive for patients to hand over their personal information for the greater good.

Patients must be introduced to the life-changing differences that can come about from divulging their personal information.

The ways in which we communicate this need to be much more coherent and strategic. Just as we faced challenges in building communal trust around the COVID-19 vaccines, we face challenges in gaining patient trust in sharing their personal information. This is where a central governing entity can play a critical role in communicating the vitality of data-sharing in a way that is accessible and clear.

Whenever we speak about data, it is critical that we emphasise the main rationale for sharing data: saving lives and improving the experience of patients.

For instance, data-sharing played a pivotal role in increasing patient safety – and saving lives - during the pandemic. The sequencing and sharing of SARS-CoV-2 genomic data led to the expedited development of an effective vaccine campaign to combat the virus.

Clinical trials will also benefit from the availability and effective use of patient data. Data can not only help to streamline clinical trials but may also help researchers to answer research questions more effectively, thereby developing more productive solutions for patients.

As policymakers, it is up to us to adopt smart communication strategies and effective policy to create an atmosphere in which a robust data-sharing culture and infrastructure can take root.

Indeed, while the potential for data-sharing in Europe is enormous, it is in its infancy.

The creation of a European Health Data Space (EHDS) is undoubtedly one of the critical priorities of the European Commission in health. The EHDS has the stated aims of “[unleashing] the full potential of health data”. Essentially, the EHDS would be a codified, health-specific set of rules, common standards, practices and infrastructures that set forth a governing framework for the sharing and use of health data in Europe.

By providing a secure and standardised set-up for the use of health data, the EHDS would play a key role of facilitating the exchange and use and reuse of health data for primary and secondary research.

And for patient data to be used effectively, the onus must be on policymakers and EU Member States to make use of initiatives such as the EHDS.

We need to develop clear and common standards as to how we collect data, how we choose which data we use and how we share and model this data. It is critical to ensure that there is deep alignment among states to enable the effective use of data.

It was EIT Health’s own report a year ago that warned healthcare systems could collapse in the years to come unless we fully embrace and address the inherent data challenges impeding widespread digitalisation. Yes, patients and citizens may be nervous.

But they need to ask themselves – “what are the tangible, life-changing benefits of sharing data?”.

If healthcare professionals and policymakers can effectively illustrate the utility of data-sharing to patients – and the cost of not sharing data – we can begin to build a better culture around data-sharing that will benefit everyone.

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