7 key actions to generate value with healthcare data and gain a competitive advantage

Maximilian Groth

Cofounder and CEO of Decentriq

Asad Preuss-Dodhy, PhD

Data Privacy Technologies and Solutions Consultant at Roche

7 key actions to generate value with healthcare data and gain a competitive advantage

25 July 2022 | 9min

Quick Takes

  • Data is central to digital transformation yet the sensitive nature of patient data has been a hindrance to real progress in healthcare, which must be overcome

  • In order to leverage data in a way that drives digital health forward, collaboration and data privacy are critical to mitigating risks and innovating processes

  • Greater access to care means a more personalized journey and a better client experience

Healthcare data is key to generate value by unlocking meaningful insights that can help transform healthcare systems and patient care. Until now, it has been difficult to truly leverage the power of data because of its sensitivity.

Today we speak with Maximilian Groth of Decentriq, CEO and Cofounder of Decentriq, and Asad Preuss-Dodhy, Data Privacy Technologies and Solutions Consultants at Roche Diagnostics, to discuss how organizations can make sensitive data their new competitive advantage if data privacy, security, and trust are kept top of mind.  

The potential of data can be unlocked through collaboration 

HT: What unmet need did you set to overcome with Decentriq?

Maximilian Groth: For almost 10 years, I have been working in the field of analytics of sensitive data. In my previous job, we frequently experienced the problem of corporations wanting to work better together with sensitive data but couldn’t due to data privacy, data security, data control, and trust. 

This is why we founded Decentriq three years ago to enable companies to work together and collaborate on analytics and data in the most secure and compliant way. We wanted to make it effortless to use and therefore, adopted.

HT: There is tremendous value in healthcare data through the insights it can generate. What do you see as the main challenges in going from raw data to valuable insights that can improve healthcare delivery and care?

Asad Preuss-Dodhy: The main challenges in going from raw data to valuable insights are:

  1. The access to the data and more importantly, the legal and the ethical access to the data. 
  2. The quality of the data. 
  3. The expertise in terms of what can lead to meaningful and actionable insights, meaning the know-how and understanding of both the data science and the healthcare space.
  4. Having a dedicated digital health arm with expertise in healthcare delivery and data analytics to generate the insights that can make a real impact in patient care.

Data collaboration is reliant on trust

HT: Decentriq was founded on the belief that data collaboration shouldn’t be complicated. Outside of the legal aspect and data quality, do you see any other complications that lead to difficulties in collaboration between organizations? 

Maximilian Groth: The use of any digital tool, including Decentriq’s platform, is always about providing maximum value and ease to clients and users. Data access can also be a problem. Another key element that greatly influences the potential for organizations to collaborate is trust. 

Even if you are an organization with an excellent reputation, we are very often speaking about extremely sensitive data. Having a trusted environment to collaborate on data is very important because then you can prove the data security, the data privacy, and of course the data control. 

I must admit, there are very subjective meanings to trust. But you can make it more perceptible through technology, having appropriate checks in place such as 3rd party audits and reviews, and having a good reputation. We believe in the end, it is the sum of all of it.

Greater access to healthcare means a more personalized patient journey

Greater access to healthcare means more personalized healthcare_Decentriq

HT: How can greater access to healthcare data pave the way for a more personalized patient journey in your opinion?

Asad Preuss-Dodhy: Today, most disease management strategies in clinical practice are derived from clinical guidelines. These are very beneficial as, without them, there would be no guidance and physicians would be left to determine the optimal care strategy based on their own experiences and expertise. This would lead to great variability in patient care and outcomes. 

However, these guidelines are generic as there would be too many different subpopulations of patients within a particular disease to consider personalization. What is becoming more evident is that more personalized care can achieve improved outcomes and potentially at much less cost and inconvenience to the patients.1,2 

To help standardize personalized care delivery and ensure its safety, personalized healthcare guidance or processes must be based on solid evidence. To generate that evidence, you not only need access to healthcare data, but you also need a large amount of data over a wider population. This is the only way to create guidance in a confident and safe manner. It requires thorough validation steps, which can only be done with much bigger data sets – hence collaboration between organizations is key.

Key action steps to generate value with data you have already 

HT: How can healthcare executive decision makers within hospitals or clinics or clinical labs generate value from the data that they already have? 

Maximilian Groth: There are 7 ways healthcare executives can generate or utilize value from the data they already have.

1 Consider all stakeholders when it comes to the steps below and data access and collaboration. As collaboration implies that you are working together with an external party or multiple external parties, it makes sense to work together within an ecosystem.
2 Share insights with stakeholders as a way of providing incentives and early adoption. This is about giving back by e.g. sharing results.
3 Make your solution easy to use and to integrate so that you can quickly get people using it.
4 Retain a certain flexibility because technology evolves quickly. Flexibility in this case refers to that offered by the collaboration environment. For example, do not choose a collaboration solution that requires local hardware deployments to stay up to date.   
5 Pay attention to the requirements and the questions you want to answer. 
6 Start by creating a rewarding ecosystem. Making sure incentives are aligned is critical for positive collaboration.
7 Have a follow-up and monitoring process. 

Trust, transparency, and the ethical use of data are necessary to generate value from it 

Asad Preuss-Dodhy: What I’ve noticed even beyond the healthcare space, is that there is a lot of skepticism from the data subjects, which in the case of healthcare are the patients whose data is being used. It’s not easy to know, even for us, the potential future problems associated with data sharing. 

There is a legal framework that exists in many countries which allows different pathways to access that data. However, even if a legal pathway exists to reuse that data, it’s essential to not compromise on trust and transparency. Going beyond what’s required by legal frameworks to ensure that the data is not misused and that it is safe and secure against data breaches is essential.

Trust can go a long way with the data subjects, not just in the clinical setting but also in the future when more healthcare moves out of the hospitals. In the near future, patients will manage their care themselves. They will generate a lot of data because the majority of it will be collected when they are going about their daily lives. This is very different from the current situation where most data is collected within healthcare facilities. 

If there is no trust, then we risk losing the potential of generating meaningful insights from that valuable data. My advice would be that regardless of how we move forward, whatever strategies that we have to use the data, we should always think about the trust, transparency, and ethical use of the data. We need to ensure that the actual use of the data is not causing any harm to the patients in the long term.

Ease of use and data access strongly impact user experience 

HT: How would you ensure ease of use? 

Maximilian Groth: As with almost every technology product, the aim is to generate a user experience that’s intuitive and easy to use. The whole technology must be robust and state of the art. It also needs to be usable regardless of technical skills because that may not be the main priority of the end user’s job.

Providing data access to users within or across different organizations is a key consideration. It can be very time-consuming to ask for access to certain information, especially for those working on multiple projects and who are busy. Having a solution in place that makes it easy to make valuable data available is crucial. If it’s complicated, it doesn’t get adopted.

Informed consent and clear use of data

Informed consent and clear use of data_Decentriq

HT: How do you envision the ideal process of gathering informed consent from patients for the use of their data? 

Asad Preuss-Dodhy: We can safely conclude that most of the time we don’t always read terms and conditions when we are signing up for something. It’s important to explore other ways of delivering that information and not just at the start of signing up for a particular service when the user may be eager or not entirely familiar with the service, for example. 

Most often than not, informed consent forms are very long and difficult to understand. It would be beneficial to explore other mediums such as audio or video explanations that patients can understand with some examples of what the terms and conditions could mean.

Lastly, it is essential to classify the reuse of data into subcategories. These subcategories first need to be more or less universally accepted categories, or at least they need to have backing from reputed academic circles. The consent to use the patient’s data needs to be clear and transparent to build trust —the more specific, for example for medical research, the better.

Providing this granularity in consent could also help moving forward. In the next 10 years, for example, people in their 40s will be more tech-savvy than they are today. As patients demand more and more control of their healthcare data, having these options of what kind of secondary use they would like to allow fully transparent, easy to understand, and flexible, could help to build trust in the long run. They may also be more willing to share the data if the trust is there. 

Decentriq successfully participated in Startup Creasphere, a leading digital health accelerator that strives to transform healthcare together with startups.

Maximilian Groth is the CEO and co-founder of Decentriq, a Swiss enterprise SaaS platform, providing secure data clean rooms to collaborate with external partners on sensitive datasets. Before founding Decentriq, Max worked at Teralytics, a company focusing on the monetization of telecommunication data. Max received his Master’s in Accounting & Finance from the University of Saint Gallen.

Asad Preuss-Dodhy, PhD is Data Privacy Technologies and Solutions lead at Roche Information Solutions. He is leading a cross-organization squad of data scientists, legal counsels, and technologists to solve data privacy challenges around the ‘secondary use’ of personal healthcare data. Asad received his PhD in BioEngineering from Queen Mary, University of London.

References

  1. Adigozel and Wilson. (2022) Article available from https://www.bcg.com/publications/2022/how-to-develop-healthcare-personalization-capabilities [Accessed July 2022]
  2. NHS England. Article available from https://www.england.nhs.uk/personalisedcare/making-the-case-for-a-more-personalised-care-approach/ [Accessed July 2022]