Interacting Within and With the Caregiver Community

Screen Shot 2015-03-09 at 11.45.24 PMAs a niche social network, interactivity will be the core DNA within Senior Care Share — the social network for Canadian caregivers. One of the site’s key goals is to convert visitors into members of the network, who return to the site at least once a month and actively participate by reading, posting or responding to others’ posts in the various modules. To guide the conversation and discourage detractor/troll behaviour, new members will be directed to review the rules of engagement. These rules will be easily accessible and enforced by the site administer, as required.

Plans are in place to develop the following two core modules within the network, with the intent to scale up to more as the site evolves:

  • A Searchable Question and Answer (Q&A) Discussion Forum (similar to Quora)
  • A Searchable Module for Ranking Senior Accommodations

In the Q&A Discussion Forum, members can interact by posting practical questions about how to best care for their senior family member/loved one. These questions can cover daily care, healthcare or even seniors’ recreation/entertainment needs, such as: Does the Ontario government cover the cost of a walker? or Which Ontario entertainment venues provide hearing devices for seniors?  Subsequently, members can interact by answering each other’s questions and posting relevant links/images.

To steer the narrative and encourage dialogue (or even visits  to the forum), the network administrator will monitor public affairs/ongoing news and regularly post timely, as well as mass-appeal, questions. The administrator will also seek and enter informed answers to many of the posted questions to grow the site’s appeal, particularly in its early days.

Text prompts and compelling icons/buttons will also urge members to interact by clicking a button to ‘upvote’ answers or enter comments about others’ answers.  The upvoting functionality will tactfully help streamline content toward practical useful information versus bursts of emotion.

Members visiting the Ranking Seniors’ Accommodation module will interact by ranking seniors’ accommodations, according to various criteria, and providing comments, based on their own experience. Members will also be encouraged to click a button to highlight helpful reviews .  To direct engagement and give members ideas, major seniors’ facilities will be pre-entered in the module and text will prompt members to evaluate them. Members will also be able to add facilities that aren’t pre-listed.

To further entice members to engage and build the site’s preliminary content, Senior Care Share’s staff will recruit and nurture site advocates. These advocates will be encouraged and rewarded (through ‘social’ credibility and other incentives) to enter accommodation reviews related to their experience or participate in the Q&A module.

As appropriate, the site will also include feature articles and interactive tools that offer ‘evergreen’ information for caregivers. One tool might be a wizard to help caregivers identify the correct battery for their loved one’s hearing aid — as getting the right match is imperative but this information is not prevalent. Other tools/wizards can be developed based on Q&As posted on the site.

Note: Illustration from PowToon application file.

Integrating Legal Safeguards to Sustain Users’ Trust

Dr. Cavoukian addressing audience.
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:

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:

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

Social Caregivers Network Image

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

Photos of influencers: Luke Wroblewski, Dr. Kevin Pho and Beth Kanter.
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, GoogleBefore 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.