Royal Free London NHS Foundation Trust and University College London

Amir Gander, Tissue Access for Patient Benefit Director at Royal Free London NHS Foundation Trust (RFL) University College London (UCL), built and manages a critical system that enables patients to donate human tissue samples  for biological research. 

His system facilitates collaboration between academic, commercial, and clinical researchers to improve access to samples and clinical information that are needed for research to evaluate new treatments and diagnostics. 

For example, his organization contributed data that resulted in faster and simpler methodologies for detecting COVID-19 during the pandemic.

Because he’s sharing sensitive information across many different groups of researchers and stakeholders, he needs a data system that is robust and flexible. 

With these challenges in mind, we recently met with Amir to learn how he leverages Knack to provide fast and reliable access to tissue samples and clinical data to help drive faster research outcomes. The samples and clinical data are anonymous to the research, so that patients can be confident their samples and data are used in the way they consented to, and are safe. 

We worked with lots of diagnostic companies to help improve the methodology for COVID-19 testing by giving them access to the patient samples they needed.

Data Systems Before Knack

Before Amir began using Knack, he evaluated and tested many different systems for collecting and sharing human tissue samples for research. Early on, they stored data in spreadsheets, but this resulted in a time-consuming process for updating and sharing information. 

As a result, collection and updates were always running behind from where they needed to be. Researchers would ask how long it would take to collect the samples they needed for their project, but it was difficult to estimate the time they’d need to collect that information. 

He also evaluated electronic medical record systems like Cerner and Epic. While they were robust, they focused on the patient journey, were expensive, and difficult to customize to their research use cases. 

Additionally, they leveraged laboratory information management systems, or LIMs, but these LIMs lacked the functionality and customizability they needed.

After finding some success with Formstack, they switched to Knack when they discovered that they could create complex data relationships in ways that weren’t possible with the Formstack platform. 

When a researcher approaches us, we can immediately let them know an estimate of how quickly the study can be completed. Without Knack, that estimate would take about a month to complete.

Why They Continue to Choose Knack

Amir’s team first selected Knack because of its ability to form complex data relationships, and they continue to use it for its flexibility and robustness. They choose Knack because it’s robust and resilient but also flexible and can be customized for their different use cases. 

Furthermore, Amir appreciates that the system has built in warnings to prevent irreversible impacts to data. For example, if his team tries to take an action that will result in the loss of information, the Knack platform will prompt them with a warning to ensure they want to take that action. 

Knack provides an optimal solution for Amir’s group, and it does so with reasonable pricing. As Amir stated, the monthly cost is reasonable and can be budgeted easily.

Knack allows an enormous amount of flexibility but is also very robust. Usually, robustness is compromised when you introduce malleability, but in Knack’s case, I haven’t experienced that.

Leveraging Knack to Consolidate Financial Data

Unsurprisingly, the tissue access for patient benefit group deals with a significant amount of complexity when it comes to accounting and budgeting. 

Because they’re dealing with many different hospital groups, government agencies, and commercial organizations, they need to consolidate financial information that’s in many different formats when conducting their financial planning. 

They’ve leveraged Knack to set up custom rules for collecting financial data and converting it to a consistent format. Thus, they can conduct their accounting and budgeting processes faster and with less effort. 

It gives us a huge amount of efficiency savings. If I have financial information from dozens of different sources, all of them slightly different, I can put that information into Knack and it will clean it up.

Building a National Data Sharing Program With Knack

In the future, Amir will continue using Knack for collecting and sharing tissue samples, and for other day-to-day, operational use cases. In addition, we were excited to learn that Knack will help play a role in a national data sharing initiative that Amir is working on. 

For this program, Amir is using Knack to help consolidate anonymized patient clinical data from multiple hospital groups across the United Kingdom. He’s making this data incorruptible, reusable, findable, and easily accessible at the national level. Also, the system will be connected to a data analysis tool to help extract patterns. 

We’re ecstatic about the potential this program could provide for contributing to national health programs, and we can’t wait to hear about its impacts.