Tackling the complexity of healthcare data

Digital transformation is very much a buzzword in the world of healthcare right now and it is easy to see why. The COVID-19 pandemic has shown us the urgent need to transform healthcare, tailoring it to the considerations of the patient, as well as the value in collaboration and sharing of data.

The pandemic however has also highlighted the inadequacy of the healthcare infrastructure - in particular, how we face specific challenges that aren’t faced by other sectors when it comes to data and technology. Many data policies are horizontal meaning they apply to all sectors, and some of these are in response to actions in sectors with very specific intentions with the data that differ from those in healthcare. As such we have a responsibility to patients to ensure emerging data policies will support the health sector in realizing the full potential of data in providing more innovative and personalized care.

We, as an industry, need to reframe our relationship with tech companies, so we can work together to establish health data ecosystems from which we both can derive deeper insights. This insight is so valuable. We can develop more targeted, personalized medicines by combining genomics, sensor and electronic medical record data along with other non-traditional data sources. Health systems use this insight to deliver more sustainable healthcare and support their patients having access to more innovative and potentially effective treatment options.

The current data challenges

While this all sounds amazing and well within our grasp, it’s not all plain sailing.

The challenges are highlighted in a recent report created by some of my colleagues alongside the Open Data Institute (ODI) about the secondary use of data in Europe. The report identified that while some countries have good practices when it comes to data collection, policy and collaboration, there are similar challenges facing many countries across Europe.

One of the main findings was around data privacy, ethics and security. People need to feel they can trust their healthcare providers to use their data in a sound and ethical way.

It’s a tricky situation - how is quality health data generated and used responsibly? We’re not a supermarket analyzing shopping habits to serve consumers with relevant deals - this is highly sensitive data and it needs to be dealt with in a respectful and thoughtful manner.? Of course, it’s not always easy - especially if we don’t already engender trust or have no transparent policies in place.?

Privacy regulation, if done correctly, should liberate data. At the end of the day, privacy is about enabling the individual to exercise autonomy over their data - and that’s exactly what we want to give them.

This issue of privacy though also extends to sharing data with other institutions and countries. This brings with it another set of challenges, as without appropriate controls or transparency around objectives, stakeholders are often reluctant to share data due to privacy controls.?

There are also further issues around data quality, interoperability, and infrastructure, which can complicate the collection and sharing of high-quality fit for purpose data.?

Moving forward?

Yet, as the pandemic has shown, sharing data and expertise is more important than ever – without it we hinder innovation, improved patient care, research and development and system efficiency. Data and technology can help us to do this in various ways - by accelerating drug discovery, increasing the efficacy of clinical trials, streamlining compliance and, also crucially, reducing costs by optimizing production and supply chain operations.

We need to set out how data partners can access, share and use data, under what parameters and for what purposes. Data governance like this, done in a collaborative way, is the difference between success and failure in most data projects.

Our part?

So, what can we do to help with this digital transformation?

Trustworthy use of patients’ data means doing it right. We are responsible data stewards, upholding the rights of individuals to their data and protecting it while it is in our use.?

We need to establish robust data policies and uphold data governance that balances the protection of individual rights, while enabling data to serve a larger benefit.?

One of the ways we are addressing this is by partnering with ODI to create a health data governance: a playbook for non-technical leaders. This will help all those organizations working with health data to understand the importance of data governance, increase confidence in data sharing in responsible, ethical and equitable ways and ultimately, improve healthcare for populations.?

We also need to consider how we engage stakeholders to get them on board when we implement new technologies – after all, these tools are only as good as the data that is put into them. There should be a dedicated focus on change management and helping colleagues understand their role in it.??

Patients also need to know that their data will be safe. Once again, this means the relationship between data and technology needs to be totally aligned.

My colleagues and I at Roche are passionate about becoming a trusted data partner, especially in emerging data ecosystems such as the European Health Data Space. What will help us achieve this trust from patients is the creation of global data policies that address data governance, privacy and infrastructure. I’m excited about how data and technology can help transform the healthcare space – these are just the first steps, and if done correctly, it could truly mean personalized and better healthcare for all.