Google the phrase “digital health” and you’ll get roughly 50 million results. But what does it actually mean for patients in practice?
An umbrella area allowing exponential scaling in terms of data, networks, information, and services, digital health has presented tantalising new opportunities across the entire health ecosystem. Digital health has the potential to accelerate research progress, (especially in emerging areas such as precision medicine) improve care delivery, allow for better decision making, create more integrated and connected health systems.
With continuous and rapid development in the technology needed to achieve this, the field of digital health is moving ahead at the speed of light, but the fear is that patients may be left behind. While involving patients in the product life cycles of medicines is now increasingly considered best practice, patients have not yet been given a pivotal role in shaping and contributing to digital innovation in healthcare. This is despite the strengths and expertise of the patient community as the one stakeholder capable of connecting all the dots and helping to shape a digital future that achieves what it promises.
This topic was the subject of one of the first sessions held during the virtual Patient Engagement Open Forum in April 2021.
Nicholas Brooke, program director of PFMD, chaired the session, which was called “How to Connect Patients to Digital Health”. The goal of the meeting was to shape an agenda on the patient role in digital health as it rapidly evolves and progresses.
Brooke set the scene by asking what exactly is it that we mean when we talk about digital health, and outlined its promise as a fast-moving field that can provide new solutions and support for patients, caregivers and HCPs and also enable better decisions and connect different aspects of health systems together. One pertinent example is that of remote clinical trials, which have been critical in ensuring that research continued during the Covid19 pandemic. Along with the positive aspects, there are key questions that remain to be answered, Brooke said: “Who do we leave behind? How fragmented are we? Good practices and bad practices? Are we patient-centric? Can we trust it?”
There is no such thing as “digital health – just health in the digital age”, Brooke stated.
The first speaker was Andrea Downing, a BRCA Community Data Organizer and ePatient security researcher, from the organisation Light Collective. She believes that we need to level up the protection of patients’ privacy and cybersecurity and she also used her presentation to explore the potential role of patients and/or caregivers in this “brave new world”.
Underpinning this is her personal story; 15 years ago she found out that she had a BRCA mutation, conferring a high risk of developing breast or ovarian cancer, and subsequently underwent a bilateral mastectomy. “I made that decision via data – the data that was available at the time. Some people with genetic mutations do not have the data to aid them in decision-making,” she noted. In her eight years as an advocate, she has sought to help bridge the genetic literacy divide so that the patient community can make informed decisions.
But Downing pointed out that “data can also cause harm” and outlined a cybersecurity story that was chilling in nature. A historic vulnerability in the data architecture of apparently private Facebook Groups meant that attackers could take the real name and personal health information of group members. While this eventually formed the subject of a class-action lawsuit with a $5bn settlement paid, Facebook health privacy problems were ultimately not directly addressed, she explained.
“Healthcare organizations are becoming particularly vulnerable to data breaches – in 2019 41 million patient records were hacked in the US alone – they are a top target for cybercriminals due to the lucrative nature of healthcare records,” said Downing.
Healthcare data can be weaponized and she noted that the patient mantra should be “no aggregation without representation”. “The stakes are really high,” she finished.
Next was Charlie Steward, a parent caregiver and Patient Advocacy and Engagement Lead at Congenica, who has spent 27 years working on the human genome at the Wellcome Genome Campus in Cambridge, UK. He pointed out that rare diseases are “not that rare”, collectively speaking; around one in 17 people will develop a rare disease at some point in their lives and there are more than 7,000 rare diseases that have been identified to date.
Steward’s daughter was born prematurely and was later diagnosed with a rare and “catastrophic” form of epilepsy called West syndrome, as well as cerebral palsy. His son was also diagnosed with severe cerebral palsy after his birth some years later. Steward told attendees he is “seeking answers via genomics” as to the basis of his daughter’s condition so that he can explore possible treatment avenues and have more accurate insight into how her epilepsy might continue to develop.
“What a patient needs versus what a patient wants” must be considered, said Steward, who also highlighted the “power” of the patient voice. Patient groups ensure that data are used appropriately and trust is “existential” when it comes to genomic data, said Steward, echoing Downing’s sentiments. “Once you lose trust, it’s very difficult to get it back again. We have to make sure that everything we do has the patient at the centre of it.”
This was echoed by Hadly Clark, Associate Director of FasterCures, who spoke to the importance of “building a trustworthy data ecosystem”. Clark used her talk to highlight the pervasive nature of health data gathering – Facebook, Amazon, Google and other tech behemoths regularly and automatically collect our data but are developing digital health solutions that could transform healthcare.
Most of us would not have predicted that these companies would have entered the healthcare space, Clark said, adding that “big tech” has almost three times more cash at its disposal than “big pharma” and also has an “unlimited” debt capacity; “we need to consider their role in healthcare influence in the digital health space.”
More diverse organizations outside of traditional health care are working with health data: collecting, aggregating, analyzing, sharing it, and in some cases even selling it, added Clark.
Digital health companies and health apps are bringing in new types of health data — data from outside the clinic and clinical trials, while genetic testing companies and consumer companies like Walmart and Amazon are getting into the healthcare space.
But what is the benefit of the patient of all this? A 2017 Wilken Institute study found patients are willing to share their health data to advance research and improve care for others but this trust erodes as the entities interacting with health data are further removed from patients’ direct healthcare. Three in 10 patients aren’t sure there are safeguards to protect health data from being misused, while almost two-thirds reported they could not track down with whom their health data has been shared
“Health data literacy is connected closely with trust – you can’t have trust without transparency and understanding of how data is being used, said Clark. She suggested that open-source educational tools are needed to make health data accessible and comprehensible and outlined how FasterCures had received funding from PCORI to create tools that would help educate patients about these basics – these were ultimately a mix of in-clinic/waiting room materials and online educational plugins.
“We need to foster a collaborative environment, where patients realise the benefit of sharing their data but strong and clear protections for health data are needed. Self-governance leads to a fragmented system and more guidance needed for these tech entities that are new to the health space.”
Jan Geissler, Patvocates, followed with his presentation on “How can digital health become of meaningful value to the patient community rather than serve the interests of other actors?” Geissler noted the “huge opportunities” that digital health presents in terms of achieving a truly patient-centric design of health services, and even explained that he himself “wouldn’t be here without digital health technology” given that it allowed him access to clinical trials and information that ultimately saved his life almost two decades ago.
Patient engagement in design, focus, development, testing, data analysis and interpretation allows capturing the true needs and experience of patients at any time and any patient subgroup providing valid information and evidence to everyone’s fingertips where needed (including the patient!) This is not about recruitment or beta-testing, but a dynamic and reproducible way to gather patient data to take better decisions
Geissler also explained that similar PE principles apply to digital health like in medicines R&D, but with more rapid innovation cycles; “It takes a long time to get a medicine to patients, up to 15 years, but the digital innovation cycle moves much quicker to improve services.” There needs to be checks and balances on the data we all generate
“In the patient community we have learned that opinion doesn’t matter, it’s a very data-driven business, whether it is regulation or industry or academic research. If evidence is king then evidence-based advocacy is King Kong”
All stakeholders have legitimate but often heterogeneous interests and the challenge is to develop a model for digital health services that serves the patient first but provides value to everyone else’s interest too
Digital health must progress within a model that is truly collaborative, Geissler said. Patvocates have devised the “5i” guiding principles for good patient engagement in the generation of health data – namely, interests, investment, involvement, implementation, and impact. “The objective is to understand the wider patient needs and not individual opinions,” he explained. When it comes to gathering data, patient organisations may soon have a new role as “data cooperatives”, while ownership must also be clarified. Are we ready for “data to the patient”, or yet another “all about us but just a little bit with us”, Geissler asked in conclusion.
“Digital health brings huge opportunities for gathering data on the needs and wants of patients in a much more dynamic and interactive way. The same principles of patient engagement in “traditional” data generation methods apply, but there are new pitfalls in going digital,” he stated.
The session concluded with an interactive, “GroupMap” exercise by which novel ideas were suggested by virtual attendees. Echoing the themes of the presentations, issues such as trust and transparency, adequate feedback loops. patient education, patient ownership of data, and co-creation of solutions were all highlighted as important by the attendees. This important feedback will “help us confront the system” and also serve to shape future discussions on digital health, concluded Brooke.
Registrations are now open for the sessions on June 23 and 24 for #PEOF 2021. Don’t forget to book your spot, register now.
