Technology made it possible to have the world at a fingerprint. As a result, every day, millions of users leave their marks in the digital world, making it possible for companies to frame them into predictive, insightful “little boxes”. The question of whether it is for good or not will depend on how they will use this information. Is our personal information treated and used with ethics? Beyond what the law says, personal data and privacy regulations such as the GDPR or CCPA, we all have an inner sense of what is right and what is wrong. Digital Ethics is something that we all wish to believe in, but few know about it.

The Loud Silence of Digital Ethics  in personal data mobile apps

Futurists foresee a world where everything would be technology-enabled. Some even picture it as the perfect utopia. A world where criminals would be caught before they even act. Where patients would be cured before they get sick. And where everyone would find love. A world governed by justice, health and ideal match. A perfect world… or maybe not?

While striving for this world, the line between right and wrong became blurred. And all of a sudden, what was supposed to turn into a dream ended up reflecting an alternative nightmare: a world that could be governed by “secret” mass surveillance, biased algorithms, and companies leveraging personal and health data to increase their profits; convincing themselves that they are, ultimately, doing it for the “greater good”. Does the end justify the means though?

Much has been said about technology enhancement, the power of personal data in enabling personalized services, offering, care and treatment. Unevenly, opening-up the Digital Ethics Pandora box is a taboo. Without any further delay, now may be the time.

The road to hell is paved with good intentions.

It always starts with a good idea. “Make the world a better place”. “Save the world”. Yet most of the time, without a strong ethic to frame it, even ideas that started with a “don’t be evil” mantra are doomed to perdition. Almost everyone has lost faith in the very notion of privacy. Trust needs restoring. As being “data plumbers” at Pryv, we see it a lot happening with personal data collected via mobile applications. Inspired to make a big change, however, innovators often lose themselves in what is right and what is not. It is not that the technology or the idea behind it is necessarily bad in itself. But like everything, if you don’t know your limits, you will eventually end up beyond them.

Despite often being hidden behind numbers, personal data can reveal a lot about individuals. What people eat, where they go, who they love. In a perfect world, these data would be used to suggest the perfect restaurant, optimize transportation, pay for what you use, not more and save us from a life of loneliness. In today’s world though, this same data can equally be used to escalate insurance pricing, enact citizens’ surveillance, and manipulate thoughts and behaviours on command. And without the enforcement of a strong ethics to surround personal data collection, this might just become our permanent future.

The Yin & Yang in Digital Ethics.

We can envision two mirroring worlds where the border line is Digital Ethics. On one side, being mindful of what is right can open up a world where we will all be doing well, healthier people and happier insurers, empowered citizens and fairer judges. Or, on the mirroring side where the code of digital ethics is not respected, we can end up in a world where we are all prisoners of our own digital twin. A world governed by fear, predictability and surveillance capitalism.

So which one is it going to be? At Pryv, we envision a world where Privacy is the norm. And while it is true that we cannot control the future, we are still empowered to make decisions today that can allow for better privacy tomorrow. In fact, it is that simple: it is a matter of choice to do it; nothing more, nothing less. Let’s build a world where treating users with respect will pay back: so be transparent, consent-centric, restore trust and build meaningful relationships with your users. 

Since 2012, at Pryv, we deliver businesses a solution to empower them building trustful long-lasting relationships with their users, manage personal and sensitive data rightfully, being confident in processing, but not « shy » for asking for more. More data brings more insights and we are all willing to share more when we trust. 

The first step is always the hardest, but we got your hand:

Privacy-first Digital Ethics Handbook.

1. 1. Respect the moral principles: apply the “do no harm” principle to personal data.
   2. Establish norms dedicated to ensure that the autonomy and dignity of users is respected: Provide your development team with the tools to implement it “rightly”.
   3. Allow your users to shape the debate and make informed choices.

The Personal Data Economy is Raising! We are offered a lot, but we have lost the essentials. Be that service provider that is there to last. Respect Digital Ethics, Develop privacy-first. 

Yours,

Stephanie & Evelina

“Personal data aggregation, sharing and processing should be as effective, secure and trustworthy as online banking. In this new paradigm, privacy is not a compliance tick box but an opportunity to break data silos, differentiate products and services, and attract end-users with trust, transparency and empowerment.” Pryv 

Additional Sources:

• https://www.accenture.com/_acnmedia/PDF-24/Accenture-Universal-Principles-Data-Ethics.pdf
• https://www.accenture.com/_acnmedia/PDF-22/Accenture-Data-Ethics-POV-WEB.pdf

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“2020: Make trust first priority…”

So what? Enough with words, actions need to be taken.

The loss of trust.

Today, if you’re in the business of collecting sensitive personal data, building trust with your customers is essential for growing your business.

For many years now, users have been misguided and left in the dark regarding the processing of their own personal data. As a result, they tend to be more reluctant when it comes to sharing confidential information.

It’s simple: if your customers don’t trust you, they won’t provide you with their most sensitive data – and that is especially true in the healthcare sector.

Trust needs restoring.

Privacy and data protection regulations are trying to compensate for that fact, but the truth is: most companies still fail at implementing great consent solutions to keep data collection secure.

Yet, consent is most certainly your best opportunity for restoring that trust, dear business owners. Instead of approaching consent with fear and restraint, you should embrace the opportunity to win new customers and engage better with your existing ones!

But, first thing first: does your customer trust you? Truly?

Enhancing trust requires rethinking consent.

From a business perspective, “consent” is a legal requirement that a company should get in order to collect, use and further profit from their customers’ data.

Certainly, this way of thinking is precisely why most companies fail at implementing consent: they use it as a way of protecting themselves instead of taking it as an opportunity to build a trusting relationship with their customers.

So what is the key to rethinking consent?

If the “customer is King” for business, “Consent is King” for trust.

Consent is not about you.

From a customer-perspective, consent is their right to fully understand and choose how you would actually use and collect their data. So don’t make it all about you.

Rightfully ask for consent and don’t let the prospect of a quick profit blind you. Chances are: you’ll get a lot more out of a lasting relationship.

Moreover, consent should be easy to give or revoke any given time. And when it comes to sensitive personal data (like health-related data), it should always be explicit.

It should be “freely given”.

Be straightforward and simple when requesting access to data. Even if you are tempted to get more data by using gamification strategies, be careful. While it is one thing to motivate your customers through games and a user-friendly interface, it’s another to get consent over addiction.

Simply explain how you will turn the shared data into meaningful insightful feedback to your customers. And don’t use dark patterns like rewards and punishment to discourage your customers from exercising their rights to privacy.

Instead, why not use these same techniques to get a “specific, informed and unambiguous” consent?

Dynamic consent.

Dynamic consent is a new approach to consent that allows companies to put data users back at the center of the decision making process.

More specifically, it is a personalized digital interface that enables two-way communication between data users and data collectors, thus allowing for customers to give or revoke consent at any step of the way.

Generally, it is that part that companies fear the most: the risk of having users withdrawing their consent which will lead to less available data to be processed.

Turning risks into opportunities!

Of course, there is a risk to allow your customers to revoke consent.

But there is also a risk not to! From GDPR fines to having customers quitting your application due to the lack of flexibility, risks of losing money and data are pretty much everywhere and are no justification for bad practices and unrightful solutions.

Also, with each risk comes an equal opportunity! In that case: building a strong, compliant growing business. What is to fear about that?

Additional benefits.

New customers, further engagement from existing ones, relevant insights based on consent choices, a proof-regulation, compliant business, a lawful, ethical and challenging work environment… There are many ways in which you can actually benefit from properly implementing and managing consent, but only if you choose to!

Just remember that building trust and empowering your customers with transparency and choice will not only benefit them, but also you and your company in the long run.

Additionally, consider that not managing consent properly also has its drawbacks.

2020: Trust in consent-power to strengthen your business!

While most companies often think only about “lost profits”: How much will I lose if they revoke consent? Would they have consented if they didn’t know?… be the one to win profits!

If you haven’t ever considered how much you could actually gain from properly implementing and managing consent, after reading this article, we hope that you will.

Wishing you all the best and success for 2020, Stephanie & Evelina.

Next article is coming soon!

Authors:

Stephanie Tischhauser, Privacy Expert & Digital Content Writer @ Pryv SA
Evelina Georgieva, co-founder @ Pryv SA

Resources:

• https://www.weforum.org/agenda/2020/01/how-to-restore-trust-in-data/
• https://www.innopay.com/en/publications/digital-consent-management-key-data-opportunities
• https://fil.forbrukerradet.no/wp-content/uploads/2018/06/2018-06-27-deceived-by-design-final.pdf
• https://en.wikipedia.org/wiki/Dynamic_consent

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• Spreading Adoption of Telehealth Solutions
• Fostering eConsent Acceptance
• Leveraging Real World Evidence Data
• Reporting Patient Outcomes

Swiss-made Pryv.io is a ready-to-use personal data lifecycle management software, specifically engineered to empower CRO and Pharma organizations to design and run decentralized, remote and direct-to-patient clinical trials.

• Trials are executed through tele-healthcare, i.e. conducted remotely with participants staying at home.
• Patients can give their consent remotely (eConsent).
• Physician visits can be done remotely (telemedicine).
• Data can be captured remotely via digital biomarkers (medical devices, wearables, apps).
• Real-World Data can be captured (geolocation, environmental exposure such as temperature, sun, humidity, and allergens).
• Lifestyle data can be integrated (nutrition, sleep, stress…).
• Multi-centric clinical trials are conducted where data is stored in different locations.
• Full compliance is respected in terms of data lifecycle management, patient rights, user access control and audit.

“Our platform will not only capture patient data but will also give participants a view on their own trial dataset, sending a strong message of transparency and inclusivity, which can truly engage them.”

Pierre-Mikael Legris, CEO Pryv SA

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Switzerland, Morges, 12 June 2019 – Pryv, the leading Swiss provider of privacy and personal data management software, and BGO Software, a Bulgaria-based leading software services and product development company, have announced the launch of an innovative eCRF solution to manage Real-World Data (RWD) and informed electronic consent (eConsent).

Designed to meet the requirements of GDPR and HIPAA regulations, the eCRF solution is based on Pryv.io middleware and BGO Software’s Metaforms software. Among the key functionalities of the solution is its ability to dynamically capture and store patients’ informed eConsent. To ensure trust and compliance, a full audit trail documenting interaction with the data is embedded in the solution.

The web-based form-building software allows researchers and clinicians to capture patients’ RWD and pave the way to useable insights . This data includes information from complex forms, questionnaires, voice input, wearable devices, mobile health (mHealth) apps, electronic patient-reported outcomes (ePRO), environment and more.

RWD is considered to be a major source of valuable information from patients in real-world conditions. Capturing RWD improves personalized patient care and enables more efficient scientific and clinical research. Additionally, this data makes it possible to monitor a patient’s safety and evaluate risk, demonstrate efficacy and effectiveness, gain market access and address the public’s growing interest in an efficient and sustainable healthcare system.

“Real-World Data is undoubtedly a valuable asset. However, creating and integrating dynamic forms and complying with regulations can be a very complex task and requires specific knowledge,” said Ivailo Ivanov, CTO of BGO Software. “Collaborating with Pryv adds an additional layer to the management of clinical data in our product Metaforms and ensures the patient’s data remains private. This is vital to ensuring they feel confident in sharing their data and giving us access to RWD.”

Though the software architecture of an mHealth application is important to ensuring the successful implementation and usage of the solution, this is only one part. A user-friendly design is more than just aesthetics. It plays a crucial role in the patient’s engagement, the operational efficiency, and the overall management of clinical data.

“A regulatory-compliant eCRF solution is one of the most common requests we receive from customers,” said Pierre-Mikael Legris, CEO of Pryv. “A user-friendly design is the key to collecting enriched RWD. By using BGO’s clinical data management experience and engineering know-how, we have been able to create an easy-to-use, modern and intuitive end-to-end solution that captures RWD and manages dynamic eConsent.”

The Pryv/BGO eCRF RWD solution can be accessed anywhere and can be customized to fit the needs and processes of any business or organization. Its functionalities benefit multicenter clinical trials. An API for third-party integrations has been made available to optimize data collection and real-time sharing. The solution is easily adopted and can be quickly launched – a transition to a paperless process is possible within a few weeks and the solution can be deployed on site or over the cloud.

Contact us to book eCRF / RWD platform demo 

About Pryv

Pryv helps organisations manage personal data from creation, use and sharing as well as address the enhanced data subject rights under GDPR such as transparency, portability and right-to-be-forgotten. Packaged for rapid integration, the software solution comes with a turnkey IoT connectivity, secure storage vault, fine-grained consent management and comprehensive auditing capability that radically cut IT development costs and accelerate time-to-benefit while addressing most stringent data protection requirements.

About BGO

BGO designs and develops solutions that help and support a number of governmental institutions, enterprises and IT organizations globally and has considerable expertise, primarily in healthcare, pharmaceutical and the clinical research industry. The company facilitates the work of, researchers, clinicians, CROs, biotechnology experts, trial managers, trial investigators, coordinators and other industry administrative professionals. BGO Software is an official Microsoft Gold Partner, Specialized supplier for manufacturing of IT of Hoffmann-La Roche and Genentech, Official Government Supplier for the Health Research Authority of the Department of Health in the United Kingdom &  Progress Premier Partner.

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“High BloodPressure is a silent killer, it doesn’t hurt and  you do not feel it, until it is too late” says Dr. Thomas Guggi, Project and Technical Lead at Riva Digital.

At Pryv, we are honoured to support Riva Digital initiative at its mission to increase the health literacy of the Swiss society by providing a solid data management foundation to enable data collection, structure, storage and sharing.

The oBPM app is collaboratively developed by Pryv, CSEM, Altran within digitalswitzerland initiative.

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Similar to Life, development is a constant stream of choices: Should you focus your development efforts on launching as early as possible? Or better focus on achieving scalability? Proving compliance? Getting certifications done? Managing the data, correctly? Winning on the UI/UX? …

Sometimes not making a choice is still a choice: we made this work for you, having all at once. 

We developed Pryv.io to optimise and de-risk your data management development efforts: from taking care of the entire data-lifecycle, enabling fast data integration, effortless data securing and auditing, ensuring data protection and privacy compliance and delivering to you a scalable data management solution, so you can handle the data of millions, under your control. And the best is yet to come: delivered to you in less than 5 days (!) 

Pryv.io is available open-source:

 Fast, agile and reliable personal data & consent management solution, at no cost

Book a demo

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