At the MedTech Forum that took place in Barcelona earlier this year, I joined a J&J MedTech sponsored panel entitled Data Governance in a Patient Pathway. I was on stage with peers from the industry, all looking at the topic from a different perspective, from the patient, to the healthcare provider, the policy maker to the industry view. There was clearly a shared passion for this topic and a united vision of how data will transform our industry for patients and the healthcare system. But it was also evident that there are major barriers and challenges that we need to collectively overcome.
Here are my reflections from the session:
Digital is transforming the world as we know it
Digital Innovation is transforming healthcare across the patient journey to improve patient experiences and outcomes. At J&J MedTech, our vision is to create a healthcare system where care is personalised, delivery is efficient and disease is understood, detected, and even prevented before it happens. Digital technologies can help realise this vision and even offer novel treatment ways such as digital therapeutics.
We are creating a digital ecosystem that joins together digital solutions, robotics, instrumentation, advanced imaging and visualization, data analytics, artificial intelligence and machine learning. To mobilize the potential of these assets, we are establishing robust connectivity with, and between, all elements of the ecosystem. Through this seamless, interconnected network, we will be able to meet our surgeons where they are in their workflow and our patients where they are in their healthcare journey.
This means the patient is more engaged during the patient pathway, they have more control, better interaction with clinical staff and faster diagnosis and recovery. For the HCPs and healthcare provider it enables a smoother patient pathway, from pre-surgical planning through to post-operative care, optimised productivity, the ability to treat more people and make more informed decisions to deliver personalised healthcare.
Data is the lynchpin for digital solutions
The benefits of digital solutions are clear, but there are challenges that we need to work through with all the stakeholders in the healthcare system before we realise this digital utopia. And it all comes down to data.
When we talk about data, we’re referring to personal health data from patients (from sensors, apps, EMRs), data generated through technologies in the operating room or hospital (robotics, RFID), and data from payors and health systems. Unlocking the potential of digitalization begins with accessing, connecting, collecting and analysing this data, and using the data-based insights to improve outcomes.
But the policy landscape and practices addressing digital healthcare across Europe are fragmented and changing – both at the hospital, country and regional levels. Key discussions and decisions about data regulation and policy, including common understanding across healthcare ecosystem and within hospitals, taking shape now, will impact how healthcare data is treated and used in the future.
To realise a full potential of digital solutions provided by MedTech and enable the use of data along the continuum of care, while respecting all privacy rules, there is a need to tackle real and perceived issues around data governance.
We need a multi-stakeholder approach to solving the data issues
While in the EU we have one personal data protection framework (GDPR), the issue is that among member states but also between different hospitals there is a different interpretation of these provisions with the most risk averse organizations supporting the most conservative interpretation of the rules.
A key point that dominated our discussion during the session was the lack of interoperability of technological infrastructure with data from different sources unable to be compared and analyzed due to a siloed approach. This is a particular problem in Spain where, due to the regional structure and complex healthcare environment, every implementation can seem like a whole new world. We need common standards and governance to make the system, understand the roles and responsibilities of the stakeholders and combine this with local and national buy in.
There’s also a complex and fragmented patient consent management with patients not appreciating the value of their data. There needs to be more effective patient education in place for them to truly understand the opportunities that are available to them through sharing their data. But it’s all built on trust. As the famous Albert Einstein quote goes “Anyone who doesn’t take truth seriously in small matters cannot be trusted in large ones either”.
Next steps on our journey
It was clear that we as a panel were aligned and united on the outcome we want to achieve for the patients and the healthcare system. But without a clear resolution for these challenges, the digital solutions key to making a difference will be bogged down. Understanding the value that digital health brings is a basis for securing resources needed for data governance and successful adoption of the solutions. In addition to the new EU Electronic Health Data Space legislation released earlier this year, we also need a bottom-up approach and multi-stakeholder collaborations to support on-the -ground, practical implementation. This is critical to building foundations of mutual trust and furthering the development of federated models of data ecosystems for increased interoperability and connectivity, while meeting GDPR.