Digital Strategies for Health Communications: Patient Community Websites Alice Miller, July 2015

Patient to Patient Interaction  Growing segment of the medical world  Promotes patient advocacy and education  Helps patients feel less isolated and alone in their experience of illness  Facilitates social interaction after a diagnosis  Provides additional resources and support systems

Patients connect with:

 Promotes a “patient input outcomes” vision.  Wants to revolutionize the way “patient-gathered” data is collected for research.  Emphasis on empowering the patients to initiate change through use of the site.

SWOT Analysis Weaknesses Balancing a ton of material Negative feedback regarding approach to data collection Patient narratives have potential to become “noisy” Battling structured academic research community Opportunities Trend of patient-focused medicine is promotional and beneficial to PLM Patients are becoming more involved and educated about medical decisions, which PLM will aide Threats Must maintain credibility The market is growing and they will have more competition Recent issue with data gathering could prevent patients from wanting to participate and partners to provide resources. Strengths Well designed Clear target audience Consistent messaging Brand consistent Positive tone to voice Large number of social media outlets

Recommendations  Promote popular patient forums on social media  Continue to promote the patient “Openness Policy” for data collection, while addressing the concerns and joining into the conversation of patient data acquisition concerns.  Approach topics with a theme of patient advocacy and health literacy along with the themes of patient-centric medicine and patient narratives.  Work more publicly with the company’s partners and investors on social media to connect with new people who may be interested in PLM’s mission.

 Non-profit, focused on the “healing” aspect of chronic illness.  Three tiers: Community, Support, Resources.  Social media content is focused on managing symptoms and learning to live with chronic illness.

SWOT Analysis Weaknesses Social media is not branded with the website Website is less professional Resource options are not prominent on the website Opportunities Lots of followers on Facebook and Twitter. Strong positive tone Broad topic of chronic illness allows for many opportunities to connect with the audience with social med Threats Must gain credibility The market is growing and they will have more competition Social media can be confusing if it is not branded with the website name Strengths Clear voice in the chronic illness community Lots of followers on Twitter and Facebook The topic of chronic illness allows for a broad range of content creating and sharing

Recommendations  Re-design the website  Put the resources link more visible on the website home page  Find partners and investors that bring credibility to the organization.  Develop a strong brand presence and build it up on social media.  Focus outreach on the patient-communication aspects of the website.

 Main focus is patient narrative, and inviting patients to share their own story of health and illness  Provides resources for a wide range of illnesses and diseases  Allows patients to ask specific questions that are answered by experts, but focused on overall general health

SWOT Analysis Weaknesses Less patient-to-patient direct contact – no “call to action” Not easy to find information about specific conditions No quick directory for patient narratives for specific conditions Opportunities Lots of followers on Facebook and Twitter. Strong positive tone Site is the most strongly associated with patient narratives Could connect with the other “Remedy Health Media” websites Threats The market is growing and they will have more competition Least amount of Twitter, Facebook followers out of the group of websites Not a lot of links to additional resources Strengths Consistent branding across platforms Unique “Ask a Question” format on the website Part of a larger company with a series of health-specific online resources.

Recommendations  Create a directory for patient narratives specific to different conditions  Find partners and investors that bring credibility to the organization.  Develop a patient-to-patient communication system in the “ask a question” format  Link to more additional outside resources that patients can refer to  Create a blog that is an extension of the newsletter to feature specific patient narratives and bring more attention to the site – share the blog posts on social media outlets