Data privacy and security are top of most brands’ minds today. Even when that data are your genes. Professor Clara Gaff, executive director at Melbourne Genomics Health Alliance and Dr Natalie Thorne, chief scientific officer, Transcendomics, are working to keep those data safe. The pair sat down with B&T to discuss marketing healthcare and how they’re keeping customers’ data safe.
While ‘marketing’ and ‘social media strategy’ might not be the first thing Adlanders think of when they hear ‘genomic testing,’ promoting genomic testing and spreading the word of its benefits to health professionals is essential for Gaff and Thorne’s work.
Gaff, as the executive director of Melbourne Genomics Health Alliance, conducts genomics research that has contributed to implementing health practices, determining where genomics has the most benefit to offer, and how it can be applied across the Victorian hospital system.
Transcendomics, overseen by Thorne, is a company that manages Genomical, a software platform that makes genomic data readable by healthcare software, usable by doctors and safe from cybertheft. Transcendomics has supported the scale-up of clinical genomic testing.
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The Genomical software platform was initially developed by the Melbourne Genomics Health Alliance, which was seeking a way to deliver medicine’s most complex tests at scale.
Genomic testing has far-reaching applications, from diagnosing rare conditions for people who are at risk of developing diseases due to their genomic sequence, to understanding the changes that arise that cause a cell to become cancerous, to better understanding microbes that are antibiotic-resistant.
Genomic testing can also find answers that other, more invasive tests miss, making it a cost-effective way to diagnose many conditions. But to reap these benefits, healthcare systems need to be informed.
Reaching the right audience is essential: “I don’t think somebody in the general public is going to be interested in service models of care and service delivery models. So, how do we get that out? A very carefully thought-through social media strategy is important for us. We have a large reliance on LinkedIn so that it can be more targeted,” Thorne said.
Short videos and website articles that feature peer-to-peer conversations, such as chief medical officers talking to other health executives, have helped to spread the message to the right audiences.
“They’re tailored to what we know these specific audiences are interested in finding out, and incorporating our messaging into that,” Gaff said.
The ‘audience’ in question is the people in the health system. When genomics testing has become more mainstream and the public begins asking questions about where their data is stored and whether it is safe, doctors should have those answers.
“When you go to the hospital, you don’t ask what computer system they’re using. You want to trust that your doctor already knows what’s happening. So, we’re communicating with the laboratories and their health services to make sure they understand how important it is for them to get their data systems up to the level that they should be,” Thorne added.
While Gaff and Thorne’s companies have tapped consultants to receive advice on digital strategy and advocacy, it is mostly developed in-house.
The Most Personal Of Data
When your entire company revolves around collecting and storing highly personal data–that is, DNA sequences of individuals–safe data management practices are a no-brainer.
However, not all genomics testing companies have the same intentions.
“When you say genomics, many people think of companies like 23andMe or Ancestry.com. While there is a lot of good that can come from analysing people’s genetic information, it is also an asset that can be sold – and that needs to be carefully considered,” Thorne said.
“There’s certainly been a perception with some overseas private companies that is what is happening, and that is a risk when you go directly from a company to individuals, and those individuals don’t have a health system or their doctors involved, and so they don’t have that safety net.
“If we went and sequenced your DNA right now, it might be 100GB of data. It’s huge, and it’s your personal information, your unique identity. It’s really valuable,” Thorne said.
“When we do these tests, it’s important that the data we get is stored safely and in a way that patients can have a say about how they might want to use that data and when they want to look at it again. It provides a lifetime of information,” she added.
Thorne started thinking early on about how to manage genetic data collected by labs across Australia, which it’s important to note can only be collected with a patient’s consent to diagnose health conditions. Working with her colleagues, they developed a large, “sophisticated” platform to store this data.
Market research firm Honeycomb Strategy found that nine in ten consumers want transparency around how their personal data is handled and 72 per cent said a company using their data for an undisclosed purpose was a ‘clear misuse’ of their information.
The ethical implications of storing data incorrectly are no different for health professionals and scientists like Gaff and Thorne than for marketers storing customer data.
“Our research has been about how to manage this data in the long run, where the primary is how this is used in healthcare, not just collecting personal data,” Thorne said.
“With data, it’s essential to maintain trust,” Gaff said. “Not only maintain trust, but ensure the data is worthy of that trust. We included patient and consumer advocates and expert representatives to inform our practices and interactions in various settings, whether it be pathology, laboratory, or in clinical patient and doctor interactions”.
The first 2,000 patients who got genomic testing done with Melbourne Genomics Health Alliance for a variety of different conditions, including cancer and inherited conditions, were asked what was important to them in the storage and use of their data.
The vast majority agreed that their data should be stored or reused and available for re-analysis, both for research and clinical practice.
Those results informed the work that Thorne has been doing in designing the data storage platforms and wider work in consent.
The platform allows laboratories from different states to access the data. That way, if an individual moves interstate and wants their doctor to look at the data, this would be fairly simple.
Looking Ahead
Gaff and Thorne emphasised that genomic testing is no longer in the realm of delivering ‘potential’ benefits, but is well and truly here in terms of producing results for patients in real-time.
In 1953, DNA was discovered. In the 1990s, efforts were made to sequence the first person’s DNA, which took 10 years. Today, it’s possible to sequence a person’s entire DNA in a matter of hours.
“People came up to me at public forums and asked whether I could tell them their futures from genomic testing and that sort of stuff. Ancestry.com set that precedent of expectations,” Gaff said.
While genomic testing wasn’t designed to predict one’s future, it is magical on a medical scale with far-reaching benefits for patients.
“Melbourne Genomics finishes up at the end of this year, very deliberately by design. Five years ago, we said that we would not be coming back seeking further funding, that collaboration like ours should create momentum, catalyse change, create momentum, and then healthcare needs to take that forward,” Gaff said.
Genomics testing is sure to become pervasive in the medical system and our lives soon. For now, the best thing is to understand how genomic data can be used–just as with AI, the unknown offers exciting opportunities, always of relevance to marketers as the media landscape changes.
