Support Communities/Social Networking Solutions for Health and Wellness/Chronic Conditions

I. PatientsLikeMe

Content Offerings Overview

• PatientsLikeMe aims to enhance the lives of patients via "new knowledge shared from real-world experiences and outcomes." As a clinically comprehensive resource, the health network has published over 100 research studies.
• The organization claims to have retrieved over 43 million data points from more than 750,000 patients living with about 2,900 conditions.
• PatientsLikeMe has a robust collection of research publications and research posters, which feature studies from 2007.

Connecting/Interacting with Communities

• PatientsLikeMe connects and interacts with its communities using many avenues, including surveys, its website, its team of advisors program, sponsorship events, and Android & iOS applications.
• The health network has run surveys and research programs like DigitalMe to connect with patients and gather research data. It also has a team of advisors program that focuses on championing the voice of the patient.
• PatientsLikeMe sponsors other individuals and non-profit organizations through donations, t-shirts, etc., to help raise funds for diseases. Since 2009, the health network has donated over $140,000 to charities and sponsored more than 600 teams.

Moderating Communities to Instill Trust

• PatientsLikeMe relies on an openness philosophy to moderate its community and instill trust. It believes in sharing patients' outcomes and experiences to facilitate global collaboration, which expedites research and improves the current health system.
• The organization also moderates its community to instill trust via its privacy policy and user agreement. These two policies define how the users and the company interact, including how patient data collected is used.

Affiliations with Other Firms

• PatientsLikeMe is affiliated with many non-profit organizations such as AKU Society, Cures Within Reach, Fallon Health, etc., all of which are committed towards different health causes.
• The organization is also affiliated with academic and research institutions like Duke ALS Clinic, King's College London, MyHealios, etc.
• PatientsLikeMe also has affiliations with industry players such as Actelion, Bristol-Myers Squibb, Computer Sciences Corporation, among others.

Attracting/Generating New Users

• PatientsLikeMe policy does not support an ad-based business model; therefore, the organization is currently not pursuing advertising to bring in more visitors to the organization.
• Instead, PatientsLikeMe is using its website to attract new users, especially those willing to share their information with other patients.
• However, activities on the social media pages of PatientsLikeMe, i.e., Facebook, Instagram, LinkedIn, Twitter, and YouTube, indicate that they could also be avenues for bringing new users to the network.

COVID-19 Information

• PatientsLikeMe is actively engaging in the topic of COVID-19 based on its most recent posts across its social media platforms like Facebook, LinkedIn, etc.
• The health network has posted several pieces of information relating to COVID-19, including details on how it can help.
• Most of the engagement in COVID-19 appears concentrated on the company's social media profiles and not its website.

II. Smart Patients

Content Offerings Overview

• Smart Patients has a robust collection of different patient communities where members can join via email. These communities feature comprehensive information on various diseases, including diabetes, acute lymphoblastic leukemia, cervical cancer, multiple sclerosis, etc.
• The organization features research studies on the latest treatments to help patients understand how improvements in personalized medicine lead to "better treatment and fewer side effects."
• Smart Patients also features multiple shared-stories by its members. These stories focus more on living with illness and help to deliver hope and inspiration to other patients suffering too. The organization has a page for patients' quotes as well.
• The organization also features a wealth of information on clinical trials for various diseases, including cancer, targeted therapy, and other conditions like cystic fibrosis, infertility, obesity, etc.

Connecting/Interacting with Communities

• Smart Patients connects and interacts with its communities via email. On its website homepage is a sign up via email call to action for individuals who have not joined the community yet.
• The organization has a dedicated web page for shared stories from members of the Smart Patients community. The stories featured provide a wealth of information on various aspects of disease treatment and recovery.
• Smart Patients also runs a 'Conversation Forum' where patients can learn from conversations regarding their illnesses, the complications they face, and the treatments they are using or planning to start using.

Moderating Communities to Instill Trust

• Smart Patients has a policy in place that requests members to respect the confidentiality and trust of their colleagues in the Smart Patients communities.
• The company's policy forbids members from sharing information disclosing the identity of fellow members on the website, in public, or anywhere else.
• Smart Patients is also committed to protecting the privacy of its users via its privacy policy that claims to protect patient information and use and disclose it only in ways that adhere to its privacy policy.

Affiliations with Other Firms

• Smart Patients has partnered with over 62 organizations, which include non-profit organizations, medical institutions, research centers, etc., according to the 'partners' page on its website.
• Some partners include El Camino Hospital (an acute care hospital), Peninsula Radiation Oncology Center (a cancer center providing state-of-the-art therapies), diaTribe (an online publication providing information on diabetes), etc.

Attracting/Generating New Users

• Smart Patients specifically attracts new users via its website, which has a call to action — 'email sign up' option on its homepage to recruit new users willing to join the online community of patients.
• The online community is also using its existing members to attract and encourage other individuals, including family members, to join the organization through sharing a 'Smart Patients Community Badge.'
• The company claims that it does not advertise on its website; therefore, it is not using advertising to generate new users.
• Smart Patients also recruits new users through its social media platforms, i.e., Facebook and Twitter. One of its posts on Twitter, reads, "You'll need to join the Smart Patients breast cancer community to take the survey."
• Unfortunately, there is no information on Smart Patient's website, Facebook, and Twitter that focuses or talks about COVID-19.

III. HealthUnlocked

Content Offerings Overview

• HealthUnlocked has a blog with five core pages, namely news, tech, health, mental health, and conditions. It is also featured in publications on Econsultancy, Evening Standards, Forbes, HuffPost, NEJM Catalyst, and The Kings Fund.
• The network publishes various research studies as well. Some titles of the research include "Development of the Patient Activation Measure (PAM): Conceptualizing and measuring activation in patients and consumers and When Patient Activation Levels Change, Health Outcomes And Costs Change, Too."
• HealthUnlocked provides health information on different areas of health. Some examples of its popular communities are the Asthma UK community forum, Couch to 5K, Parkinson's Movement, SHARE Metastatic Breast Cancer, Thyroid UK, etc.
• The health network also provides a broad array of educational programs, including A Practical Guide for Dementia, Living with Lung Cancer, Lower your cholesterol, Your Hearing Matters, etc.

Connecting/Interacting with Communities

• HealthUnlocked primarily connects and interacts with its communities via email. It includes an email sign up call to action clause on its site's homepage.
• The health network has more than 700 condition-specific communities with over one million members globally. These communities are supported on the HealthUnlocked platform and allow members to interact, share, and connect with others.
• The company is also active on social media, in particular, on Facebook, Instagram, LinkedIn, Twitter, and YouTube, which provide ideal platforms to facilitate patients' interactions.
• HealthUnlocked has an application for iPhone and iPad available on the App Store to help individuals find support groups, see updates from groups, compose messages, receive notifications, etc.

Moderating Communities to Instill Trust

• HealthUnlocked communities are moderated by health experts, along with community guidelines that dictate how users should behave towards each other on the network.
• The British Heart Foundation, the Multiple Sclerosis Association of America, and the National Rheumatoid Arthritis Society are the health experts moderating HealthUnlocked communities.
• The organization has in place many safety and security measurements that help to govern the behaviors of its community members, including how they can report content, what type of content they can post, cyberbullying and trolling, etc.

Affiliations with Other Firms

• HealthUnlocked partners with various organizations on matters regarding healthcare solutions, research solutions, and patient organizations solutions.
•  British Heart Foundation, which champions for a world free from heart & circulatory diseases; Allergy and Asthma Network, which aims to end asthma-related deaths; and the National Rheumatoid Arthritis Society, which helps individuals to manage rheumatoid arthritis — are examples of institutions that have partnered with Health Unlocked.

Attracting/Generating New Users

• HealthUnlocked advertises on its website and can use advertisements to attract new users to the network.
• It uses its website to attract most of its new users. According to Similar Web, HealthUnlocked website receives, on average, 1.99 million visitors each month.
• The organization also relies on its NHS Choices’ user-generated and interactive content powered by its communities to help raise awareness and attract a broader audience that may have never heard of the organization.
• HealthUnlocked actively posts on its social media platforms, i.e., Facebook, Instagram, LinkedIn, Twitter, and YouTube, which it uses to attract new members.

COVID-19 Information

• HealthUnlocked actively covers COVID-19 information on its website and social media posts.
• The organization focuses on several aspects of COVID-19 and publishes posts covering various elements regarding the disease, including vulnerable groups, COVID-19 & other conditions, caution, etc.

IV. myHealthTeams

Content Offerings Overview

• myHealthTeams offers insights into the various effects chronic conditions have on its members' lives. These insights aim to create awareness and understanding of those chronic conditions.
• The organization presents its research collaborations at industry conferences. On that note, myHealthTeams has included eight conference posters and one newsletter on its insights page.
• myHealthTeams publishes several news articles and press releases, as shown on its press page. These publications have broader coverage because they are also published on other sites like Bloomberg, CBS, FiercePharma, MedCity News, MM&M, Reuters, etc.
• The company also publishes some content on social media platforms, in particular, Facebook, LinkedIn, Twitter, and YouTube. Moreover, its network of teams also provides comprehensive content generated by users.

Connecting/Interacting with Communities

• myHealthTeams encourages individuals to join its network of teams via Email or Facebook. It claims to use MailChimp and SendGrid (U.S.-based email marketing service providers) to create and send emails, as well as advertise its services.
• The institution's network of teams' websites feature two calls to action clauses on each homepage that asks users to continue with Facebook or sign up using email.
• myHealthTeams offers both Android and iOS applications for each of its network of teams. Some networks currently do not have apps; however, myHealthTeams indicates on its website that those apps are coming soon.
• The applications for each team allows myHealthTeams members to connect and engage in different ways like following members' photos or updates, posting updates, discovering new patients like you and near you, adding diagnoses and viewing others, etc.

Moderating Communities to Instill Trust

• According to an article published on The Body.com, myHealthTeams websites and networks of teams have high levels of positivity that help to moderate how members talk and exchange with others.
• The organization has dedicated and comprehensive 'terms of service' and 'privacy policy' pages on each of its network of teams with details and guidelines on how members are supposed to behave and conduct activities on the site.
• Encouraging patients to share information with others to help improve the health outcomes of individuals suffering from various illnesses can also help to moderate the networks and instill trust.

Affiliations with Other Firms

• myHealthTeams claims that it works with nine out of the ten global pharmaceutical brands; however, it has not yet disclosed the brands.
• The company also partners on four main topics, including patient education & activation, patient research and insights, and clinical trials.
• myHealthTeams has not provided an example of the partners it affiliates itself with on its 'partnerships' page.

Attracting/Generating New Users

• myHealthTeams uses email to acquire new clients since it is using the services of MailChimp and SendGrid, which are both U.S.-based e-mail marketing firms.
• The company uses its website and network of teams to attract new users. In this regard, it generates users from each of its massive network of teams that focus on specific conditions.
• myHealthTeams advertises using MailChimp and SendGrid, which can help it attract new users. Importantly, the organization is also active on social media platforms like Facebook, LinkedIn, Twitter, and YouTube channel to attract and engage new users.
• Unfortunately, myHealthTeams has not published any recent information on COVID-19. A thorough search of the website shows that the organization is not currently involved in the topic of COVID-19.

Research Methodology