Integrating Legal Safeguards to Sustain Users’ Trust

Dr. Ann Cavoukian, Executive Director, Privacy and Big Data Institute, Ryerson University, outlines the advantages of embedding privacy in technologies, at a February 28, IABC event in Kitchener, Ontario.

Relevant Legislation & Best Practices

As my senior project is to develop a niche social media network for Canadian caregivers, it must address three key areas of Canadian/Ontario legislation:

• Privacy: Personal Information Protection and Electronics Document Act (PIPEDA) and Canada’s Anti Spam Legislation (CASL)
• Copyright: Canadian Copyright Act
• Accessibility: Accessibility for Ontarians with Disabilities Act (AODA)

In addition, I need to provide ‘Community Guidelines’  to ensure users act appropriately. Along with behaviour guidelines, I must embed references to privacy and copyright law in these guidelines. In addition, I must make it clear that this social network isn’t liable for undesirable outcomes, due to community members’ advice.

The third area, accessibility and AODA, outlines escalating legislated requirements that must be incorporated into all web properties to accommodate people with visual, audio, motor and cognitive disabilities by 2021. This presentation by Ad Web Com provides a clear explanation of this legislation and will be a good reference for developing this niche network. Similarly, CASL will control my solution’s need to take a ‘permissions-based’ approach to recruit members but will not impact online documentation.

I also need to adhere to copyright law, ensuring I am legally allowed to post specific content and providing credit, as required.

Given the sensitivity of personal healthcare information, which caregivers or my community members may share about their loved ones, PIPEDA is my highest legislative priority.

Safeguarding Trust Versus Legislation

Steps to address these areas falls under mandated legislation or legal recommendations/best practices. However, Dr. Ann Cavoukian, Executive Director, Privacy and Big Data Institute and Ontario’s former privacy officer, is advancing a global Privacy by Design standard to embed privacy as a default in all technology. For my niche network, this means ensuring that De-identification Protocols are incorporated in the code from the onset.

Furthermore, Dr. Cavoukian positions privacy as a competitive advantage, not debilitating compliance. In many ways, I think all these legal requirements/recommendations or ‘safeguards’ can be considered a competitive advantage because they all help to win and sustain the community’s trust.  I want to keep this in mind, when I address prospective members and describe this niche social network.

Legal Documentation Models 

As examples, I reviewed privacy and community guidelines for:

• LinkedIn: User Agreement, Privacy Policy, Copyright Policy
• Tyze: Terms of Use
• Carezone: Security, Privacy Policy
• The Caregiving Space: Terms of Use, Legal Stuff

One of the key tenants of transparency is making things clearer. LinkedIn, Tyze and Carezone have tried to do this in their policies/guidelines.

For example, Carezone, uses a second person voice, a reassuring tone, user-centric headings (e.g. how we protect your data) and plain language to specifically explain how it uses technology (e.g. encryption), physical safety measures (e.g. private network residing in a data centre monitored 24/7), policies and procedures to keep data private. This includes providing specific examples, such as: “We transmit your email address to UserVoice so we can interact with you through email, but we give them no further information about you.” In contrast, the Caregiving Space uses exhaustive legal terminology to explain its privacy and other guidelines, writes some sections using almost illegible all capitals, and offers vague assurances, such as: “… use industry best practices approaches about security measures to prevent the loss, misuse and alteration of the information.”  Where possible, I think it’s most effective to adopt Carezone’s voice, editorial style and more specific approach.

Both Tyze and LinkedIn go further to enhance the user experience when conveying policies and community guidelines. Tyze provides the required legal documentation, as well as a short synopsis in a conversational voice. And LinkedIn, provides friendly user-centric explanations, much like Dr. Cavoukian’s ‘privacy as an advantage’ position, and offers short (1.45 minutes or less) videos to explain user agreements and privacy. I think it will be particularly beneficial to use videos, as LinkedIn does, to explain policies and community guidelines to the caregivers network members to help ensure clarity.

Reviewing these guidelines, particularly those from Carezone and LinkedIn, gives me a framework of key topics for my network’s privacy and copyright sections. I’d like to apply Carezone’s same second person voice and plain language tone for the Community Guidelines.

For example, the Privacy and Security Guidelines should include:

• How we collect your information
• How we use your information
• How we protect your data
• Information sharing and disclosure
• Third-party services
• If there’s a problem
• Reporting a problem

There are likely more topics to address in my legal documentation but this is a ‘safe’ start.

Bracing for the Thorny Challenges of a Healthcare Network

My senior interactive media project is to develop a niche social media network for informal ‘caregivers’ (i.e., people responsible for a senior to elderly family member or other loved one). Its working name is: Social Caregivers Network (SCN).

My vision is to develop: a one-stop resource to help Canadian caregivers share and quickly access trustworthy recommendations that give their loved ones the best care. Unlike the plethora of recommendations from senior care companies with a profit-driven agenda, the SCN will give caregivers access to objective recommendations, tested by other caregivers who share their challenges. It will also save time by giving caregivers access to others’ discoveries/learnings.

Having never produced a social media network, I don’t know all the challenges but here are those that come to mind:

1. Defining Scope that Meets My Audience’s Top Priorities – Caregivers face a broad range of challenges — from finding a reliable hearing aid to making an end of life decision. While tempting, the SCN can’t cover every scenario. The challenge is to narrow the scope to a feasible mandate that delivers distinct value to the end-users. As with any interactive media project, I need to start with the audience (including key personas) and its priority needs or use case scenarios. To achieve this, I plan to survey a sampling of this audience to collect qualitative data on where the needs are greatest and criteria for success. Only then, can I select the functions/features to address these needs and define the scope.
2. Making the Interface Accessible, Compelling and Intuitive – There is no point in producing the SCN unless I strive to follow UX best practices and ensure AODA compliance. Beyond this, I plan to incorporate testing, such as a card sort, to keep the solution aligned with the audience’s habits/perceptions as it progresses.
3. Avoiding Scope Creep – Throughout this project, I’ll be challenged to keep tasks within this scope and ensure that iterations don’t include new mandates. This will be tough as I’m sure I’ll discover many ‘great’ ideas but believe by adhering to proven project management methodologies with effective tools, I can avoid this pitfall.
4. Proposing a Technically Viable Solution and Finding the Resources to Bring it to Fruition – Although I have some technical understanding, it’s a challenge to not ask for something that’s impossible to build.  More importantly, I need to find the human and financial resources to complete the SCN. For this, I’ll rely on mentors within and outside the college for technical and entrepreneurial guidance
5. Adhering to Privacy Legislation and Avoiding Liability Issues – Since the SCN deals with personal health details, it must adhere to all applicable privacy legislation in Canada, as well as possibly the US.  Similarly, I need to ensure the SCN is not liable for undesirable outcomes due to community members’ advice.  To avoid both of these issues, I’ll check applicable guidelines and invest in a legal review/opinion before it goes live.
6. Building, Nurturing and Protecting an Engaged Community – Although a social network’s long-term value is in its community and their interactions, it must be built first and nurtured. I need to develop tactics to attract members and initiate conversations/engagement, particularly in its early days.  I also need to incorporate features to mitigate/block trolls/detractors, who can tarnish the user experience.

This is my initial challenge list but I need to proactively identify and stay ahead of others as I move forward.

‘Healthy’ Social Media and UX Influencers to Follow

Influencers to follow: (left to right) Luke Wroblewski, Dr. Kevin Pho and Beth Kanter.

One of the best ways to hone progressive skills is to learn from leaders and build on their best practices. Interactive media is no exception and reading relevant blogs is an effective way to do this. As my senior project is a niche, social media healthcare solution, I want to hear insights from:

1. Interactive UX design gurus
2. Healthcare leaders mastering social media
3. Social media experts in healthcare/not-for-profit sector

1. Interactive UX Design Gurus –

If it existed, my ″ideal″ influencer would focus on UX design for consumer-focused social media networks that improve overall health.  Short of that, I think these UX experts/blogs will offer great tips as my project evolves:

• Luke Wroblewski, Product Director, Google – Before I even look at Luke’s blog, his biography underscores extensive credibility that makes him follow-worthy.  He held lead design roles at Yahoo and eBay; founded and sold two start-ups (to Twitter and Google); co-founded the Interaction Design Association; wrote books on usability and mobile first; and has 113 k followers on Twitter @lukew (including me). What’s more Luke’s regular blog Ideation + Design (which I now follow) features practical articles with visual examples, such as a recent one that clearly explains ‘why’ we should display passwords on login screens, as well as ‘how-to’ UX videos.  He also regularly attends industry conferences and share his notes and learnings with his readers. I think his articles will help inform some of the design decisions I’ll face in developing my senior project and its prototype.
• Several UX Experts and the UX Booth blog – This robust blog covers various aspects of interactive design for beginner to intermediate designers, neatly organized into various accessible categories, such as: analytics; content strategy; design strategy; interactive design; and resources — to name a few. It is linked to Twitter handle @UXBooth.  I think subscribing to and reading this weekly blog will help me stay on the right course and enable me to incorporate best practices from various aspects of effective interactive design.

2. Healthcare Leaders Mastering Social Media – As one of the latter disciplines to adopt social media (due in no small part to privacy issues), experts in this area are true pioneers, overcoming numerous opposition to achieve success. In this category, I’m going to follow Kevin Pho MD, who practices primary care at the Nashua Medical Group in New Hampshire. An active blogger, Kevin explores where medicine, health care and social media intersect. CNN named @KevinMD as one of its five recommended health care Twitter feeds. He also has profiles on Facebook, Google+ and LinkedIn.  (I’m following/liking him on all his social profiles at this point, except LinkedIn, as doesn’t know me — yet.)  All these accolades make him a solid bet for my attention. More importantly, Dr. Pho is the founder and editor of KevinMD.com, a blog endorsed by the Wall Street Journal, Forbes and the New York Times.  Although many of this blog’s articles touch on technology/digital, I like the way its social media articles are grouped in one area making them easy to find and check for best practices dealing with this sometimes sensitive topic.

3. Social media experts in healthcare/not-for-profit

Since I need to think ahead on ‘how’ I will bring my senior project solution to market, especially through social media and community-focused strategies.  The best resource for doing this, who I have followed for some time, is Beth Kanter. Beth has written many books, is on the UN’s list of most influential bloggers and both Fast Company and Business Week have endorsed her as a social media expert.

She regularly posts on Beth’s Blog: How Nonprofits Can Use Social Media, one of the longest running blogs for nonprofits. It’s filled with practical examples that I can likely apply to my project.  I follow Beth’s Twitter, Facebook, Pinterest, Google+ and You Tube feeds.

I’m hoping that watching and heeding the advice of these experts will keep me on a track to success with my senior project.

Inspired by Meaningful Connections

I find the pace and potential of technological innovations exhilarating. I’m inspired by the potential to create digital solutions that are not just viewed, read or heard but those that create meaningful connections that improve people’s offline lives.

When I graduate from my interactive media management program, my dream role is to work as a digital strategist developing interactive solutions, ideally for healthcare education or health 2.0 solutions.

For my senior project, I’m torn between  two ideas that make meaningful connections with the user.  Each idea steams from topics I’m passionate about: healthcare and social responsibility.

 Empowering Patients and Caregivers

Through various roles in my career, I’ve learned how technology can benefit healthcare — from increasing productivity to improving patient outcomes. I’m inspired by technology’s potential to changes lives plus thrilled to have played a tiny role in the process.

More recently, my healthcare work has included contracts with Ontario’s Community Care Access Centres, who provide homecare and other services to seniors.  This experience, combined with caring for my 90-year-old mother, showed me the challenges Canada’s senior citizens face. It also made me acutely aware of shortfalls in our current system.

These shortfalls make it difficult for family members or caregivers to navigate the system and access the best supports for their loved ones. Unfortunately, the average consumer is not well-versed in seniors’ diverse needs but for a growing number of players, it’s a booming business. This scenario makes its hard for caregivers to find clear, unbiased answers about the steady stream of services, medications and other ‘must have’ products sold to seniors.

Much of the information I’ve learned about resources and remedies for seniors’ conditions, comes from my work, research or word-of-mouth. Once uncovered, objective answers about what form to use for a walker rebate, trusted Personal Support Workers (PSWs) for emergency respite care or the ins and outs of sleep apnea, are gold. I’ve shared them with friends caring for aged relatives.

I wonder however how much time we could save others if we shared these insights with a broader network? After all, we use social networks for professional development, news, childcare or how-to ideas. Why not have a social network for caregivers to share insights about senior care options in a specific province or for specific conditions? With our aging population, I think this is a practical interactive solution to pursue.

Maple Syrup with Worldwide Value

I’m  also inspired by Canada’s benefits and our opportunities to make meaningful connections with other cultures. In 2012, I took a ‘voluntourism’ trip to Peru to help promote a socially responsible jewellery factory. I brought a maple syrup gift for my host Peruvian family. They placed it in a back cupboard, where it likely still sits unopened.

The challenge is people in many cultures don’t eat pancakes and don’t know what to do with maple syrup.  So ‘what if’ we could create a website with a database of authentic international recipes that use maple syrup?  Students, tourists or NGO workers could access and print a maple syrup recipe for their destination country (in English or the country’s language) and present it with their maple syrup gift. This solution would enable us to ‘act local but think global’ on a small-scale and make a positive first impression of Canada, as an inclusive country.

Both ideas have merit. The caregivers’ network idea is huge but links with my long-term interest to work on health 2.0 solutions. The second is truly Canadian and timely, given this summer’s Pan Am games.

Maybe I should just flip a coin or a pancake?  What would you choose?