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Outsourcing in Clinical Trials 2020 Virtual Conference

We recently had the pleasure of sponsoring and attending the Outsourcing in Clinical Trials (OCT) virtual conference. Although we would have loved to have met everyone in person, it was great to listen to those who share our passions and values and chat with everyone throughout the day. Read on for a low down of the talks that resonated with the team at COUCH Health the most.

If you’ve read our content before or have explored Demand Diversity, you’ll know how passionate we are about doing our bit to tackle the lack of diversity in clinical trials. Meghan McKenzie, Genentech highlighted that disease pattern, clinical presentation and therapeutic response can vary dramatically with ethnicity and ancestral background. This wasn’t news to us, but it was interesting to see these facts about the potentially underrepresented patients of the future:

  • By 2040, over half of US people living with Alzheimer’s disease will be black or Hispanic
  • By 2045, breast cancer in the US will increase by 72% in black people, 89% in Hispanic people and 120% in API
  • By 2050, Alzheimer’s disease cases in China will account for half of all global cases

It was great to see that Genentech is trying to act based on insights and challenges across different stakeholders. There’s an assumption among some site staff that patients of certain ethnicities aren’t willing or able and therefore aren’t asked to take part, so Genentech is introducing processes and training to ensure all potentially eligible patients are asked. Alongside this, a lot of traditional sites don’t have access to diverse patients or experience recruiting, so it was suggested to use target trial demographic and site mapping to identify sites with a diverse catchment area. While this is all (finally!) a step in the right direction, we were left wondering – how relevant are some of these actions while trust and awareness are so low among certain ethnic communities? While patient education and outreach were touched on, we strongly believe it needs to be at the forefront of any ethnic diversity strategy.

Using blockchain in clinical trials

If you haven’t come across blockchain technology, it’s essentially a way digital information (the block) can be stored in a public database (the chain). In this session by Frank Leu, CEO of Novapeutics, we were reminded that discovering and developing safe, effective drugs is a challenging and expensive process, which involves sophisticated technology and lots of different stakeholders. And with this in mind, we need effective tools that enhance the collaboration of sharing data. Blockchain is already being used to decentralise data elsewhere, and within the clinical trial space, it has the potential to build trust by securely storing data in real time.

Data stored within blockchain is auditable, trackable, immutable and can be used to create a longitudinal record of a patient’s health status, for example. With the advantages it brings in terms of security, and the validating nature of the technology, this would benefit every stakeholder – from patients to sponsors.

We’re sure that blockchain will have an increased presence within clinical trials over the coming years.

Translation really is a critical milestone in patient recruitment

Here at COUCH Health, we’re well aware of the importance of translating patient recruitment materials into local languages, be it print or digital. But it was good to hear this talk, by Stéphane Millet, General Manager of Acolad, emphasising the importance of accounting for cultural differences too.

The kinds of things we need to consider when preparing recruitment materials for different countries are:

  • Use of culturally appropriate language – some English words can have negative connotations in other languages and cultures
  • Impersonal language – some words are more impersonal in other languages than English

It’s recommended to do cognitive testing of translated materials with native speakers. This way, you can assess how clear your materials are and if they’re culturally appropriate.

Delivering the best patient experience

Lastly, a talk that really reflected things we stand for at COUCH Health. All about maximising the patient experience. We heard from Zach Hales (Greenphire) and Trishna Bharadia (Health Advocate and Patient Engagement Champion) about how important it is to understand key barriers to participating in trials, including:

  • Being given the opportunity and information
  • Relevance
  • Support – time, financial, logistical
  • Trust

We’ve discussed the importance of considering the participant journey before, and this talk highlighted how this will differ the context of COVID-19 and beyond. Virtual trials or at least elements of virtual trials may come to the forefront faster than they otherwise would’ve done due to the pandemic. Is your study prepared for these changes and ready to decentralise? It’s definitely a movement we’re excited to be a part of!

This blog was first published here.

12th June 2020

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