Healthcare organizations today collect vast amounts of patient data across their websites, mobile apps, and digital health platforms. However, recent surveys show that consumers are increasingly concerned about how their personal information is gathered and used online. In fact, studies find that the majority of healthcare website visitors will abandon a site if consent options are unclear or burdensome. You know, the popup that talks about cookies.
Failing to properly inform users and gain meaningful consent can have major legal and reputation consequences. We have seen regional and national class action suits. But implementing thoughtful consent flows and preference centers is about more than just avoiding penalties. It’s about respecting individual privacy needs and building digital experiences people can trust. For healthcare organizations, earning user trust is especially vital.
Let’s examine why thoughtful consent management matters for websites, outline relevant statistics and regulations, and provide guidance on building a robust consent framework tailored to healthcare industry needs.
The Growing Importance of Privacy Consent Management
Recent surveys make clear that healthcare website visitors have heightened concerns around data privacy compared to just a few years ago. In 2022, 70% of respondents reported willingness to share their health data with their doctor/clinician. To a lesser extent, respondents were also willing to share their health data with family (51%), insurance companies (46%), and pharmacies (44%). [1]
California HealthCare Foundation found that some users fear that the information they share would be used to deny them health insurance or a job. [2] Poor consent experiences erode user trust quickly. This aligns with research from Accenture showing 91% of healthcare consumers want more control over their data. [3]
A key factor driving this trend is the steady stream of headlines about cyberattacks, data breaches, and misuse of private user information by tech companies. According to one survey, over 80% of consumers are more concerned about data privacy today compared to just 2-3 years ago. [4] These concerns spike further when people are asked about sharing sensitive health information online.
Layered on top of general privacy worries are new regulations giving consumers more power over their data. In the US, state laws like the California Consumer Privacy Act now give residents rights to access, delete and stop the sale of their personal information. In the EU, the General Data Protection Regulation (GDPR) requires informed opt-in consent before collecting user data.
As regulations expand and consumers demand more transparency, implementing thoughtful consent flows and preference centers goes from nice-to-have to need-to-have. The companies that make privacy easy for users will gain a competitive edge. Those that fail on consent management may face declining engagement, loss of patient trust, and financial penalties for non-compliance.
Key Consent Management Statistics for Healthcare Industry Sites
- In one survey, 70% felt extremely (28%) and moderately (42%) concerned about potential data breach [5]
- 13% of patients are not willing to share their medical records for any reason [5]
- 69% say poorly explained consent options decrease trust in a brand [6]
Key Laws and Regulations Governing Healthcare Privacy
Healthcare websites must navigate a complex web of federal and state laws governing user privacy in the United States.
Key regulations include:
Our well established – HIPAA
The Health Insurance Portability and Accountability Act (HIPAA) is one of the most prominent healthcare privacy laws at the federal level. First enacted in 1996, HIPAA establishes national standards for confidentiality and security of protected health information (PHI). This includes medical records, insurance details, and any personal data tied to an individual’s healthcare.
HIPAA applies to covered entities like healthcare providers, health plans, and clearinghouses as well as business associates that work with them. It limits use of PHI to essential healthcare operations and requires reasonable safeguards for storing and sharing digital health data. Patients must authorize uses of PHI for marketing, sale or data sharing beyond treatment and payment.
Our new friend – HITECH Act
The HITECH (Health Information Technology for Economic and Clinical Health) Act became law in 2009 as part of the federal stimulus package. It expanded certain HIPAA provisions by increasing data security obligations, requiring notification of breaches affecting 500+ people, and prohibiting sale of PHI without patient authorization.
The States need love too – State Data Privacy Laws
In recent years, a growing number of US states have enacted legislation giving residents greater control over personal data held by businesses. Key examples include:
- California Consumer Privacy Act (CCPA) – Gives CA residents new rights to access, delete, and stop the sale of their data. Applies to businesses with over $25 million in revenue or those buying/receiving data on 50,000+ consumers.
- Virginia Consumer Data Protection Act (CDPA) – Starting 2023, requires opt-in consent before processing sensitive data and opt-out consent for non-sensitive data. Fines for non-compliance.
- Colorado Privacy Act – Also takes effect 2023 with requirements similar to CCPA and CDPA. Gives people right to correct inaccurate data.
- Nevada Privacy Law – Requires data collectors to allow consumers to opt-out of sale or sharing of their data. Fines up to $5,000 per violation.
Our friends across the pond – GDPR
The European Union’s General Data Protection Regulation went into effect in 2018 and applies to any website or app offering goods/services to EU citizens. GDPR mandates transparent notice of data practices and sets high standards for valid consent including clear opt-in permissions before collecting user information.
Fines for GDPR non-compliance can reach 4% of a company’s global revenue. The law continues to have ripple effects as other nations model new privacy legislation after its terms.
5 Steps to Build Effective Consent Management for Healthcare Sites
Constructing consent experiences that are truly helpful for users requires both design thinking and technical execution.
Here are 5 recommended steps:
- Take Inventory of Data Collection and Usage
- Design Consent Flows Centered on Transparency and Choice
- Make Consent Easy to Find, Understand, and Act On
- Build Consent Management Tools into Site Architecture
- Continuously Review and Refresh Approaches
With privacy regulations frequently updated, consent management must stay nimble. Revisit approaches quarterly, or whenever new laws or business practices emerge. Document your consent management program details and logic flows for internal and external auditing.
Tap legal counsel for guidance when changes warrant. If new technologies like location tracking or biometric data enter the mix, ensure consent mechanisms address the shift. Make refinements based on web analytics, user feedback, and privacy team recommendations.
Moving Beyond Minimum Compliance
Approaching consent as merely a compliance hurdle can backfire. Research suggests layers of generic notices numb people to giving meaningful consent. They simply become conditioned to clicking “agree.”
Linking consent experiences to your healthcare organization’s values provides a better framework. View privacy as a pillar of patient service and trust rather than just a legal obligation. Make choices easy to understand. Invest in design refinements that feel respectful of individuals.
When people gain comprehension and control, they reciprocate with greater willingness to share data that enables personalized healthcare. Ethics and empowerment drive opt-ins more than mute agreement.
We need to listen to our audience
Consumers have made clear through surveys and actual online behaviors that privacy remains one of their top concerns—especially in healthcare contexts. Failing to create transparent consent experiences can undermine compliance, trust and user experience.
Done strategically, privacy and consent management gives healthcare websites a competitive differentiator that aligns with patient expectations. Beyond just avoiding penalties, it demonstrates an organization’s commitment to ethical principles and individual data rights. For healthcare providers, building this trust and transparency is well worth the investment. With the right approach to consent, protecting privacy and delivering personalization do not have to be mutually exclusive.
Sources:
- [1] Rock Health – 2021 Digital Health Consumer Adoption Report
- [2] Here’s Looking at You: How Personal Health Information Is Being Tracked and Used
- [3] Accenture – 2018 Consumer Survey on Digital Health
- [4] Cisco – 2022 Data Privacy Benchmark Survey
- [5] Health Gorilla – The State of Patient Privacy
- [6] Sourcepoint – 2022 Consumer Privacy Trends Report
- [7] Deloitte – 2021 Global Privacy Survey
