Everyone who cares about health should care about data

It’s a well-known fact that we’re more willing to share our data with Facebook, Google or Amazon than we are with organisations helping to deliver better health outcomes. Global tech giants gather, aggregate and monetise personal data in return for free online services. Imagine if this data sharing model was applied to medicine discovery in oncology or expanding treatments for rare-disease patients?

Recently, digital health has been growing exponentially as big data, artificial intelligence and other technologies come to the fore, although many would argue healthcare is slow to adopt and innovation is behind wider society.

This seems at odds with the industry’s heritage, where data is critical to patient outcomes. Digitalised, anonymous records now assist clinical trials, help design medtech or fine-tune social care, reducing service burden and improving treatment adherence. But is the healthcare sector driving innovation or simply adopting it?

Data is everything today. All of us now realise the power of our personal information

“Data is everything today. All of us now realise the power of our personal information. At the same time data has the potential to improve the lives of millions. It’s high time we started contributing more to the conversation. We need a data-sharing model that can work for everyone,” explains Dr Myles Furnace, digital health and data lead for Ipsen UK and Ireland, a leading global biotech.

“For many new initiatives, there’s an issue getting hold of good quality data. Yet it has the power to accelerate drug discovery, reduce research costs, prevent disease onset and progression. It represents a new opportunity for patients, health services and industry. Data will support smarter, faster and better decisions. From pharma’s perspective, it allows us to fail faster and innovate quicker, recognising what’s working and what isn’t to drive the right advances.”

The rise of digital health comes at a time when the pharmaceutical industry is increasingly regulated. Introducing data and technology into the mix is going to increase its complexity, adding greater scrutiny to a sector that’s poorly perceived by many.

“Yet there’s a disconnect between the medicines, treatment and health services that save people’s lives and the data needed to deliver them. Data-based research today means better healthcare outcomes tomorrow,” says Eugenia Litz, vice president of investor relations at Ipsen.

“We need a more trusted environment for researchers across industry and academia to make the most of patient data. That starts with an agreement on who we trust with our information, who benefits and what we hope data-sharing will achieve.

“At Ipsen, we’re driven by the value collaboration this can bring to patients. If we don’t proactively address this mistrust in information-sharing that extends beyond healthcare, then patients will never benefit from new data-driven innovations.”

Digital health is the next step and it could go a lot further with the right dialogue, so let’s start talking

It comes at a time when the UK public want more control over their data. A poll conducted for the Institute for Public Policy Research shows that 80 per cent want tighter regulation on how Google, Facebook and Amazon use people’s information. While this is happening, global tech giants and digital players are investing heavily in healthcare. Could the sector be forging ahead without building public trust?

Pharma is also bottom of a list of 25 industries in terms of reputation, according to a recent US survey by Gallup. It’s a disappointing reality that researching and bringing medicines to market to improve and extend lives is still perceived to be worse than tobacco, oil and advertising. The pharma industry clearly needs to do better.

The NHS is now looking into the issue of digital health and creating a cohesive data strategy that promotes good governance.

The debate raises many moral questions. Would you be willing to share your health data to save lives? Who do you want your data shared with? Do patients want new treatments generated on the back of data insight? If big data and artificial intelligence optimises diagnoses and drug delivery, who should benefit?

“Doctors, academics and pharma have a crucial partnership, but at the heart of this debate sits real people to whom this data belongs. The free flow of information shouldn’t be viewed as inherently good unless the public sees it that way. For this to happen, they have to see the benefits, new treatments, technology or data-driven success stories,” says Litz.

“We need increased transparency, greater understanding and we must educate patients about digital health developments. Otherwise confidence will be in short supply. Real dialogue with the public is crucial. In 2019, Ipsen achieved industry-leading sales growth of 15 per cent; trusted strategic partnerships are crucial to our success as we seek to develop effective therapeutic solutions. We recognise that the patient journey is key to building trust.”

Ipsen stats

The Association of the British Pharmaceutical Industry is also focusing on boosting trust in the sector’s activities, pushing for research to be more transparent, accessible and understandable. After all, the industry is the biggest funder of UK research, investing £4.5 billion developing future medicines.

“The good thing about data-driven, digital health is that it’s patient centric. New technologies aim to connect patients with their data, conditions and outcomes. Patients are no longer bystanders in their treatment journey, but co-creators,” explains Furnace. “We want to address this reputational challenge and work with health systems and researchers to build trust.”

Digital technologies will help Ipsen understand the patient experience better, their environment and lifestyle, particularly during clinical trials. Data-driven decisions could increasingly determine whether to accelerate or stop the development of new innovations in oncology, neuroscience or rare diseases.

“Digital health has the potential to really empower people. We live in the ‘patient era’ when we all have greater access to information than at any point in history. Engagement from all stakeholders in this new data-driven era will determine everything,” says Furnace.

“The industry will have to change the way it talks. This is much broader than drugs or data. It’s about optimising patient care and delivering real outcomes. Pharmaceutical innovations have saved millions of lives in the hands of healthcare professionals. Digital health is the next step and it could go a lot further with the right dialogue, so let’s start talking.”

For more information please visit www.ipsen.com/uk

Date of Preparation: March 2020
This content is authored and sponsored by Ipsen Limited