The Partners in Research App

The Partners in Research app by CareHubs is more than an app. It’s a community, a networking tool and a collaboration space. Partners In Research is LinkedIn meets Facebook meets Google Docs.

And with broad appeal (share your story, share your research, share your health-related news), low-friction onboarding (a user can sign up and begin receiving the email digest from which they can participate in the conversation at any time), and a familiar look and feel (LinkedIn +Facebook) for ease of adoption, the Partners in Research app has been built for connection and engagement. How Partners in Research facilitates partnerships.

1. Sharing stories and resources is one of the easiest and most powerful ways to engage people in a community.

2. Social networking keeps them coming back.

3. Private work groups gives researchers a space to develop relationships with patients, clinicians and others interested in patient-centered research.

4. Engagement tools like email digests, reply-by-email, notifications, voting, polling, goals, and gamification all serve to make the Partners in Research app more than and app to download once, but rather it’s a community where those interested in patient-centered research will come back to again and again.

App Developer’s Past Performance – CareHubs Inc.

CareHubs launched in private-beta in Jan 2012 as part of the inaugural class of Healthbox Accelerator. Since that time, CareHubs has quietly become the leading private-label, online community engagement platform for the healthcare industry, serving customers like Arnold Palmer Children’s Hospital, Mayo Clinic, Memorial Sloan Kettering, Seattle Children’s Hospital, UCSF Medical Center and more than a dozen other leading providers.

Being the only white-label, HIPAA-compliance-ready online community platform available on the market today, CareHubs is also currently involved in a number of clinical trials and academic studies that are testing the efficacy of online patient engagement with both clinicians and peer support groups via CareHubs (vs. traditional in-person methods) to impact outcomes and patient satisfaction in areas as diverse as recovery from cardiac surgery, diabetes management, providing care for patients with Traumatic Brain Injury in underserved communities, and recognizing & treating depression in family caregivers of cancer patients (details and references available on request.)

The CareHubs founding team has worked together full time for over 5 years. Other than the seed investment from Healthbox, we have neither sought nor accepted any additional outside funding to date. CareHubs is financially self-sustaining at its current level and well equipped to support this project on an ongoing basis if we are selected as the winner.

Design Team

Although some would consider the CareHubs design team to be limited to Paula Gill (chief product officer and caregiver to a chronically ill family member), Mike Barbary (UI/UX specialist and e-patient) and Aparna Khambampati, MD (medical advisor), we feel that our design team is much larger than that.

CareHubs supports well over 100,000 monthly active users across its network of patient, clinician and healthcare-stakeholder community sites. Since inception, we have engaged deeply with our customer and user base, and have been privileged to get design input from: patients across the demographic spectrum, clinicians who use CareHubs “in the trenches” every day, and even professional designers from the Mayo Clinic Center for Innovation (one of several Mayo Clinic centers we are proud to have as a customer) IDEO (via Sandbox Industries) and many more than we can name here.

Many of the biggest design lessons our community members and clients have taught us have had little to do with what we would have originally considered “design” when we were first starting out. Just one example is our ability to support robust community participation via just email or SMS. We learned that many of the patient populations we need to serve don’t necessarily have access to smartphones or even always-on internet connectivity. Moreover, even those that do can’t always use them. One community member (the mother of a child with leukemia who is deeply involved with patient advocacy and research) told us that she wanted to participate in the conversation daily, but she was prohibited from installing unauthorized apps on her phone, and all ‘social’ websites were blocked at her office for security reasons. “Everyone has email” she told us “why can’t I just use that?”

Promotional/Marketing Strategy

As has been well documented, the majority of apps are never downloaded at all (some industry studies place the number of Apple App Store apps with zero downloads at more than 400,0001) and the majority of apps downloaded are never used2.

Successfully building and engaging an online community around an initiative like PCORI’s matchmaking app is a labor-intensive endeavor. However, CareHubs has spent many years focused on exactly this, and we bring unique promotional and marketing capabilities to the table as a result. There will be 4 primary pillars to our approach:

1)Focus on “Information Seekers” – we know from experience that the majority of people coming to our site for the first time will likely not be searching for “PCORI” or “Partners in Research” but likely for information about their specific disease/condition/area of interest using their own ontology.

2)Maximize Search Engine Discoverability by Encouraging Conversation - the user-generated content in social media has the potential to be of *enormous* value especially to the rare disease patient and the research community. This is further enhanced by our localization/internationalization (multilingual) support and our built-in SEO features.

3)“Virality” and Gamification – CareHubs core features like invitations, social sharing, twitter hashtag syndication and badges encourage early users to spread the word.

4)Active Community Management – the single most important success factor in launching and sustaining more than 20 health-focused online communities is active management. We have the features, staff and partnerships to support that at launch and beyond.

Versions – Partners in Research

• Web - Responsive web design • Mobile – Available across all devices

Discoverability

• Sneak peak of Posts, Events and News items that are fed in via RSS are publically available, making the app easily discoverable and approachable by those unfamiliar with P-C Research.

• Once logged in, the user gets additional customized suggestions of Members with Shared Interests and Suggested Content from the site.

Making Connections

• Liking, Following and Bookmarking posts are low-friction methods of engaging and indicating interest.

• Rich user profiles offer an opportunity to get to know other members much more deeply and contact them easily.

• The Members with Shared Interests feature suggests possible contacts based on matches to interests you list in your profile.

Researchers – Private Workspaces available to connect and collaborate

• Researchers can sign up for a private workspace where they can engage with members who want to participate in patient-centered research projects

• Researchers have a host of communication options: @Mentions, Private Messaging, and Emailing their whole group at once.

• They can invite members of the community or send invites out to people not in the community and invite them to join their group.

Researchers – Posts and surveys, email group members, share documents, private message

• Researchers can easily engage with members in their group via posts, voting, goals and polls as well as private messaging and social networking.

• Partners in Research enables one-to-one as well as one-to-many engagement, either via the site or via reply-by-mail in the Daily or Weekly Digest.

PCORI Requirements: How Partners in Research by CareHubs meets them:

Facilitates creation of partnerships among all user types: Researchers, Stakeholder, Patient

Rooted in the principles of sharing and community. Frictionless networking and engagement are built into the platform.

Users must be able to self-select the user type(s) with which they primarily identify

Custom registration paths let users identify themselves by type and also allows for access to custom content and features.

Internal (user-only) communication platform Private messaging is built into the app.

Ability to translate from English, and/or a plan for translating the app into various languages and Section 508 compliance

Chrome and Internet Explorer both have built-in translation capabilities so translation in a web-browser is easy.

Social media integration for external networking Robust user profiles There are features in this platform not able to be covered here: Social log-ins, social sharing of content, post to the site from your browser, etc.

Interoperability/ ability to integrate with pre-existing research networks (such as, clinicialtrials.gov, and the PCORnet CDRNs and PPRNs)

Partners in Research can easily accept RSS feeds, has a news waterfall feed that pulls in Tweets and YouTube videos, and has an ever-expanding API.

A clear designation that participation in the application is voluntary and disclosing PHI is the app user’s choice and responsibility

Registration requires acknowledgement of Terms of Use and agreement that participation and divulging PHI is voluntary and the responsibility of the user.

Experience Partners in Research for yourself. Log in as Diane (patient) or Frank (Researcher)Username: diane_p / Password: pcori1Username: frank_r / Passwords: pcori1

Click on the user’s name to see their profileClick on the top navigation menus to private message themClick on “Frank’s Private Workgroup” from a profile to see the space