Privacy policies are long legalese documents that obfuscate meaning. Nobody reads them because they are indecipherable and obtuse. Yet, these are the documents that tell you what’s going on with your data — how, when, and by whom your information will used. To put it another way, the privacy policy lets you know if some company can make money from information (like selling you email to a spammer).

Creative Commons did an amazing thing for copyright law. It made it understandable.

Creative commons reduced the complexity of letting others use your work with a set of combinable, modular icons.

In order for privacy policies to have meaning for actual people, we need to follow in Creative Commons footsteps. We need to reduce the complexity of privacy policies to an indicator scannable in seconds. At the same time, we need a visual language for delving deeper into how our data is used—a set of icons may not be enough to paint the rich picture of where you data is going.

Understanding Data Flows

With the rise of web services, your information can end up in unexpected places. To get a better understanding of some of the complexities of data flow, we sketch out how Anti-phishing works in Firefox (with help from Oliver Reichenstein).

Here’s what that looks like as a wall of text, which is the typical privacy policy mode.

The difference in understandability is huge between the text and the schematic. In fact, while we were working on creating this infographic we found a hole in our legalese and updated it accordingly.

The idea here is that by creating a visual schematic language, it is relatively painless way for a company to convert their wall-of-text into something a bit more approachable. And that the more visualization actually shines a light into the dense tangle of words, possibly highlighting flaws or trouble spots that would have otherwise remained hidden.

The simple form

The visual schematic language is a descriptive way of explaining a privacy policy and helps us to understand what’s going on underneath the hood. It doesn’t solve the problem of being able to quickly figure out the guarantees a privacy policy is making on your data.

For that, we want to move from the descriptive to the proscriptive, to a set of legally-bindings icons like Creative Commons.

As an experiment, we tried a schematic form of icons. The feedback that we’ve got so far is that the schematic is over-kill and that a set of icons more similar to Creative Commons’s would be easier to scan and understand. The next step is for us to come up with a set of orthogonal decisions about what compromises the most important aspects of a privacy policy. In the end, we probably shouldn’t have more than 5 icons in the interest of simplicity.

For now here are a set of axis we’ve come up with that need to be whittled down:

Is your information…

Shared with a 3rd Party? Shared internally within the company?

Anonymized/Aggregated before being stored or used?

Personally Identifiable?

Stored for more than x number of days?

Encrypted on the server?

Monetized (sold) in some way?

Usable to contact you?

Update: Based on the feedback, we’ve decided the set of attributes people should care about.

Aza Raskin, former head of user experience at Mozilla Labs and creative lead for Firefox, now runs Massive Health, a startup that aims to help people take control of their health. This post originally appeared at his blog.

Share on Twitter

7 Responses for “Making Privacy Policies Not Suck”

  1. BobbyG says:

    Data “are,” Aza.

  2. john says:

    That’s all you have, Bobby? This brilliant kid puts it all out on the line and all you got is a pedantic snarky comment. Back under your rock and stay there.

    • BobbyG says:

      That’s ALL? Gimme a break. Yeah, it was irascible, and no one can deny his Sheet. I rather doubt he’ll be as Indignant as you.

      I know I’ve pretty much lost the battle on “data are,” but, nonetheless, I will hold the line, pedantic as it may be. I cut my professional teeth under the now-retired head of Industrial Safety & Health Physics for Oak Ridge National Laboratory and Editor of the Health Physics Journal (John A. Auxier), — which doesn’t make me anything other than someone who knows how to use the word “data” correctly (Dr. Auxier had final cut on several of my technical papers, being my boss at the time).

      I then went to work for a time as the Technical Editor in an industrial digital diagnostics firm. The product hardware and software engineers would submit to me their technical paper drafts, uniformly shot through with “data is” stuff that I would promptly change to “data are,” which would then get red-lined back out to “data is” by my Sup, our VP of Marketing (a crew-cut old-school mechanical engineer).

      “It just looks wrong”

      He also once banned me from using the words “affixed” and “atop” (“…with the remote FFT sensors affixed securely atop the turbine housing…”)

      “They sound faggy.”

      (not kidding)

      “john,” whoever you are, I have PLENTY to say about privacy policies, it’s part of the work I do for my REC and HIE. See my blog. And, specifically type in “Raskin” in the top left search window.

      I’m hardly living under any rock. Cute Amazon.dot.com’ish / web 2.0 privacy icons and colorful flow diagrams might be helpful here and there for patients in (this blog being, after all, about health care, not about online commerce), but the complexities of data security and privacy under HIPAA and its subsequent 45 and related 42 CFR regs (and states’ HIPAA-superceding laws and regulatory codes) might not reduce to such rolled-up e-commerce user-friendliness.

      I kept waiting for the tie-in to healthcare, “data” word mis-usage aside. Would have been helpful.

      Notwithstanding that I’m some pedantic, insubordinate old coot, I too can roll up complex subject matter into a concise graphic.

      http://www.bgladd.com/ePHI_MU_security_model.jpg

      That’s just the “PHI Security” side. “Privacy” is a whole ‘nuther, way, WAY more complicated kettle of fish (albeit intertwined with the former) when it comes to protected medical data. e.g.,

      - Consent (“opt-in” vs “opt-out” and, within that, blanket vs granular, permitted uses, revocability, etc);
      - Rights of data “ownership”;
      - Rights of “access” (and within that, rights to timely redress of errors, and processes for “accounting of disclosures” via now mandatory “always-on” HIT audit logs);
      - CE vs BA responsibilities and liabilities (HIPAA “Covered Entities” vs “Business Associates”);
      - Breach Notification requirements;
      - Breach remedies, both civil and criminal;
      - Data retention requirements ;
      - HIPAA and other federal regs vs states. On this subject, state laws and regulations trump the fed stuff, which begs a boatload of questions for both patients and health care delivery organizations. We have two inside Privacy and Security Counsel and an Outside review law firm. Sometimes I have to roll my eyes at the confusions they come up with.

      BTW, PHI Security is gonna get even more inscrutably complex should PHI “encryption at rest” survive the current regulatory review period (an increasing concern regarding “mHealth’ apps).

      In sum, sorry for my churlishness. I shall slither away now, Game 7, Rangers vs Capitals draws nigh.

      • BobbyG says:

        Rangers 2-1 in regulation. On to NJ. That’ll be gloves-off/

        Coda question for “john” –

        Apart from misusing “data,” does being a “brilliant kid” give you a decorum pass on using the word “suck” in the title of a blog post on a nationally known health care blog?

        I know, I know; like “data,” it’s lost its meaning. It’s become simply a crass (and prime-time TV prevalent) synonym for “stinks,” or, “incompetent,” or “is burdensome/a hassle.” No longer pejoratively means you’re “gay” or “a slut.”

  3. Whitney says:

    A good idea.. makes it easy on the reader if they already understand the meaning of the icons or can easily click on the icon to see the exact privacy policy if they don’t fully understand it. I wonder what happens if the policy were to change at some point? Hopefully staff are informed of changes and don’t assume it’s the same because they icon is the same. Get that ironed out and it’s a great idea.

  4. Albert says:

    Hello my loved one! I want to say that this article is awesome, great written and
    include approximately all vital infos. I’d like to see
    extra posts like this .

Leave a Reply

THCB BLOGGERS

FROM THE VAULT

The Power of Small Why Doctors Shouldn't Be Healers Big Data in Healthcare. Good or Evil? Depends on the Dollars. California's Proposition 46 Narrow Networking
MASTHEAD STUFF

MATTHEW HOLT
Founder & Publisher

JOHN IRVINE
Executive Editor

JONATHAN HALVORSON
Editor

JOE FLOWER
Contributing Editor

MICHAEL MILLENSON
Contributing Editor

ALEX EPSTEIN
Director of Digital Media

MICHELLE NOTEBOOM Business Development

MUNIA MITRA, MD
Clinical Medicine

Vikram Khanna
Editor-At-Large, Wellness

THCB FROM A-Z

FOLLOW US ON TWITTER
@THCBStaff

WHERE IN THE WORLD WE ARE

The Health Care Blog (THCB) is based in San Francisco. We were founded in 2004 by Matthew Holt and John Irvine.

MEDIA REQUESTS

Interview Requests + Bookings. We like to talk. E-mail us.

BLOGGING
Yes. We're looking for bloggers. Send us your posts.

STORY TIPS
Breaking health care story? Drop us an e-mail.

CROSSPOSTS

We frequently accept crossposts from smaller blogs and major U.S. and International publications. You'll need syndication rights. Email a link to your submission.

WHAT WE'RE LOOKING FOR

Op-eds. Crossposts. Columns. Great ideas for improving the health care system. Pitches for healthcare-focused startups and business.Write ups of original research. Reviews of new healthcare products and startups. Data-driven analysis of health care trends. Policy proposals. E-mail us a copy of your piece in the body of your email or as a Google Doc. No phone calls please!

THCB PRESS

Healthcare focused e-books and videos for distribution via THCB and other channels like Amazon and Smashwords. Want to get involved? Send us a note telling us what you have in mind. Proposals should be no more than one page in length.

HEALTH SYSTEM $#@!!!
If you've healthcare professional or consumer and have had a recent experience with the U.S. health care system, either for good or bad, that you want the world to know about, tell us about it. Have a good health care story you think we should know about? Send story ideas and tips to editor@thehealthcareblog.com.

REPRINTS Questions on reprints, permissions and syndication to ad_sales@thehealthcareblog.com.

WHAT WE COVER

HEALTHCARE, GENERAL

Affordable Care Act
Business of Health Care
National health policy
Life on the front lines
Practice management
Hospital managment
Health plans
Prevention
Specialty practice
Oncology
Cardiology
Geriatrics
ENT
Emergency Medicine
Radiology
Nursing
Quality, Costs
Residency
Research
Medical education
Med School
CMS
CDC
HHS
FDA
Public Health
Wellness

HIT TOPICS
Apple
Analytics
athenahealth
Electronic medical records
EPIC
Design
Accountable care organizations
Meaningful use
Interoperability
Online Communities
Open Source
Privacy
Usability
Samsung
Social media
Tips and Tricks
Wearables
Workflow
Exchanges

EVENTS

TedMed
HIMSS South x South West
Health 2.0
WHCC
AHIP
AHIMA
Log in - Powered by WordPress.