Aggressive Transparency, Data Privacy and the Opt-in Movement
January 06, 2015
In the era of big data, the most effective organizations are seeking ways to combine disparate data sets to generate new insights.
This should be the goal of every biopharmaceutical company today. By linking clinical trial data with electronic health records and other data sets we can inform social and clinical research and generate innovative solutions that could lead to new treatments and marketable products that will improve outcomes for patients around the world.
But the industry must be cautious, particularly in the way we use patient information. Data privacy is a major issue for patients and other industry stakeholders, and the idea of linking databases for biopharma research makes many groups skittish.
Research shows that in general people don’t mind having their data used and linked if they believe it will lead to better decisions that benefit them and the broader population — as long as they are confident that the data is both secure and anonymous. But they are adamantly opposed to their data being sold, or used to sell them things.
The public already has serious concerns about data privacy when it comes to the healthcare industry, and they are extremely suspicious of what biopharma companies intend to do with this very private information. And because there is little information publically available about how their data are being protected and shared, trust is not as strong as it should be.
The best defense against such concerns is aggressive transparency. When we educate the public about how data are stored and shared, and we show them exactly what steps we are taking to de-identify individuals in order to protect their privacy, it can go a long way toward stemming their fears. In particular we need to demonstrate good governance.
As an industry we must adhere to their desires, and protect their privacy above all else, or risk losing their trust, and ultimately access to their data. And that risk may be closer than you think.
In June, 2014, the British Medical Association (BMA) voted to support an opt-in approach to the NHS England’s care.data program, which seeks to link GP data to hospital patient data, amid concerns over management of data. That means extraction of patient data for NHS England’s care.data roll-out could only occur if patients formerly agree to opt-in.
BMA argues that such an approach is necessary because the care.data program lacks confidentiality in its current form and there is a risk that individual patient data could be shared. Concerns about previous management of NHS data were raised in a recent report commissioned by the Health and Social Care Information Centre (HSCIC), which uncovered a number of lapses in procedures when releasing the data to third parties.
If such a model takes hold, it would dramatically devalue scientific research. Yet examples like those in the HSCIC report, show how easily we can lose the public’s trust. If we further erode their trust by even appearing to abuse or mishandle their records, such opt-in models will be inevitable, and it will have devastating consequences on our future research needs. The Royal Statistical Society’s Data Manifesto published in September 2014 notes that “We will have poorer analysis if people can opt out when they have nothing to fear and yet much to gain”.
The ADRN solution
The UK government is attempting to address this challenge in a more positive light, while harnessing the competitive advantage of big data, through the newly formed Economic and Social Research Council's (ESRC) Big Data Network. In October, 2013, ESRC announced £64 million funding of four administrative data research centers and a data service that together form the Administrative Data Research Network (ADRN). The centers will make routinely collected administrative data accessible for research in ways that prevent the identification of individuals, while providing a sound evidence base to inform research, and policy development, implementation and evaluation.
A major component of the program is to develop a safe, secure and efficient system for linking, managing and analyzing administrative data, founded on secure technologies as well as on trust between data owners, researchers and other interested parties including the public.
Such organizations can help us develop the necessary infrastructure to both keep data safe, and communicate that safety to the public in order to secure their trust. If we work in conjunction with such organizations to protect data, and broadcast our efforts, it will ensure we have access to this valuable information in the future.