Best Practice Sharing Session:

Community Engagement Using

Digital Technologies

• Mitchell R. Lunn, MDPRIDEnet at University of California, San Francisco

• Ben Nowell, PhD, MSWArthritisPower™ AR-PoWER PPRN

1

Overview

Multiple Tools/Platforms

Facebook, Twitter, YouTube, Emails, Blogs, Instagram

Multiple Objectives

Recruit participants to participate in research network

Deploy messages, send info to target populations

Inform people about research opportunities and findings

Connect people across barriers (geographic, etc.) to reduce

feelings of isolation

Enable and encourage discussion and decision making

among many stakeholders: patients, clinicians,

researchers, health systems, advocacy organizations, etc.

Use metrics to assess effectiveness of posts/messages

2

Agenda

Web: Recruitment and Design Considerations

Domains

Online Communities

Search Engine Optimization (SEO) & Optimized Landing Pages

Short Codes

Liberated Orbital Content

Facebook & Twitter

Email

3

Web

Deploy pop-

ups/modals &

notification bars on

your website.

If your site is

catered to your

target audience,

popups and

notification bars

typically refer

people who will

most likely convert.

4

Web

Interface &

experience

important

Familiar nav

Direct users

to desired

flow

Link to social

Spend $ on

UI/UX

5

Web

Responsive design

Available on all

devices

Accessibility

Placement implies

priority

6

Domains

Buy them!

Re-direct traffic to primary domain

Use Google Analytics to determine which

domains are/are not generating traffic

7

lgbthealthlab.com

lgbthealthlab.org

lgbtlab.com

lgbtlab.org

pride.education

pride.online

pride.study

pride.tech

pridenet.lgbt

pridenet.tech

pridestudy.lgbt

pridestudy.org

thepridestudy.com

thepridestudy.org

Online Communities

8Health eHeart Alliance

Online Communities

9CENA

mosaic.ucsf.edu

Online Communities

10CENA

mosaic.ucsf.edu

App Community Forum

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SEO & Optimized Landing Pages

Few people search for registries. People ARE searching for

information related to their condition.

Understand what your audience is searching for.

Use free tools like Google Keyword Planner to see search

volume.

Do a Google search for potential topics and see the

suggested keywords

Create informational pages related to your topic. Add relevant

calls-to-action throughout the page to join your registry.

Create Google search ads to drive traffic to your page. Target

your ad at relevant keywords.

(Example - next slide)

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13

SEO & Optimized Landing Pages

Social Media Posts

Share graphics of the actual app.

Give users a preview of what it’s

like to be a part of your registry.

Of all Facebook posts about

ArthritisPower, we found that

screenshots of the app drive the

most registrations.

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Short Codes

Keyword

selection

Short code

(5 digits)

Response text

~$50-5K/month

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Liberated Orbital Content

Traditional Model

Sites have content

We (users) orbit around them

We reach out to site whenever we want content/connection

These demands change sites (e.g., responsive design)

New Model

Distillation

• Content stripped to “bare bones” message

• Remains HIGHLY attributed (clear where it came from)

Association

• Content is associated with a user (e.g., Facebook account)

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Liberated Orbital Content: Videos

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Liberated Orbital Content: GIFs

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Liberated Orbital Content: Shareable Images

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Liberated Orbital Content: Physical (!) Materials

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Facebook Ads for Recruitment

Try different messages for different audiences.

Identify the messages that are driving the most registrations.

Optimize by metrics like cost per conversions, clicks, and click-

through-rate.

Shift your budget to the best performing ads. Create more ads

like them.

Use Facebook retargeting ads.

On your registration form, put email at the very beginning, so

you can email those who never became a user.

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Facebook Ads for Recruitment

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We found that ads with testimonies drove

the most clicks and the lowest cost per

conversion. So we created more ads with

testimonies.

Facebook Best Practices for Engagement

Always use an image

Create short and actionable text

Consider boosting posts that do

well organically (Facebook has a

“pay-to-play” model, meaning

you will organically reach only a

small percentage of your

followers unless it’s a boosted

post)

Use Facebook Live to stream

interesting events or moments

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Twitter Best Practices for Engagement

Twitter limits tweets to 140 characters. Be punchy, to the point.

Find what health hashtags people are using. Symplur.com is a

good resource for popular hashtags for each condition or key word.

Tweet multiple times a day. Retweet relevant information.

Join Twitter chats like #CreakyChats.

Use Periscope to stream interesting moments or events.

Add images to make tweets stick out. Twitter recently changed so

images don’t count toward character count.

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#CreakyChats: Twitter Engagement

Monthly patient-centered live twitter discussion for people with

arthritis and related chronic conditions.

Recent topics:

Arthritis Frequently Asked Questions, featuring Arthritis

National Research Foundation (@cureArthritis)

Sleep + Arthritis, featuring Sleeptember.org

(@Sleeptemberorg)

Key is to pick date/time and stick with it. Find organizational

partners to collaborate.

Create a transcript of the chat by using Storify.com.

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Email

Set up an automated email welcome series for new users.

It should be triggered as soon as a participant signs up,

welcoming them to the community.

Communicate regularly.

Tell users what your research team is learning with a

monthly newsletter. Keeping your users around is a lot

cheaper than acquiring new users. Share research

learnings regularly to keep them engaged.

Action-oriented messages

Be clear with desired action and HOW to do it

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Email

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