Earlier this year a new patient-focused social network called HealthKeep went live. It’s not like most social networks though: users remain completely anonymous. Essentially a patient’s Facebook, without the faces, or names for that matter. We had the opportunity to speak with HealthKeep’s co-founder, Soyoung Hwang, about the site, its origins, and its goals.
Shiv Gaglani, Medgadget: What is HealthKeep?
Soyoung Hwang: HealthKeep (HK) is an anonymous social network available via the web and mobile devices that (1) provides a safe platform for people to share health experiences, learn from others who can relate, and find a support community; and (2) represents a dataset that can offer value by promoting improvements in delivery of care and greater clinical research and understanding.
HK addresses this problem by giving people the opportunity to share personal health experiences anonymously. HK is a HIPAA-compliant network, so it can offer people the chance to be intimate without being vulnerable: users can discuss deeply personal experiences and connect with others, all the while secure in knowing that their identity will never be exposed in connection to the sensitive information shared. This anonymity lets people be completely transparent about health issues and crowd-source advice and support from hundreds of others who can relate. In effect, we think of HK as path to health promotion via information therapy and a patient portal founded on the wisdom and experiences of people who have been through it all before.
The system works by having users share an experience or add health information to their profile (conditions, symptoms, medications, procedures, goals). It then creates a customized social feed that connects the user to others who share those experiences. HK also tailors a live-stream news feed to each user, providing personally relevant health education. In this way, HK not only serves as a powerful tool for patient empowerment, but it also promotes transparent health dialogue and it safely brings the power of social networks to health promotion.
Medgadget: When did you launch and what has the response been like?
Hwang: We launched the site in April and got 1000 active users in the first 90 days and saw a 50% increase in active users over the next month giving us 1500 registered users now. We have active communities in almost 400 health variables (most active ones are Fibromyalgia, diabetes type 1 and 2, multiple sclerosis, depression/anxiety, migraines, and chronic pain) averaging now 5000 uniques/month and 30,000 page views/month.
Medgadget: How did the idea behind HealthKeep come to be?
Hwang: Lyle is Chief of Neurology at Bon Secours Health System and has been a practicing physician for 18 years. As a physician engaged in patient care, he noticed that when people were faced with a new health experience (whether it’s diagnosis, new medications, symptoms, etc.), there was a tendency for them to try to connect with others who have gone through the same things. Based on this, he thought it would be interesting to create a network for patients to quickly and seamlessly connect with others who share similar experiences. He’s also been a web tech enthusiastic and founded and eventually sold the largest online electric car community (gm-volt.com). It was while GM-Volt.com was growing and becoming more and more successful, and the social media landscape was really starting to explode that he started to think more seriously about setting up this patient network.
Medgadget: What insights have you learned thus far?
Hwang: There’s a really immeasurable and significant value to creating a space for transparent health dialogue. It’s not medicine, but having the opportunity to share your experience, tell your story, and have it all acknowledged truly can be a form of therapy for a lot of people. Our users take advantage of the site to get direct advice about medications, side effects, clinical experiences and so on, but it’s become clear that many of our users find that on top of the value of learning from and contributing to a repository of patient wisdom, the simple act of talking about a health experience with others able to relate can be incredibly important and validating. In particular, we’ve seen this evidenced in recent weeks in a surge of engagement within the fibromyalgia, depression/anxiety, and diabetes communities on the site.
Medgadget: Can you describe the process of becoming HIPAA compliant?
Hwang: As Lyle realized, the original idea for HealthKeep had hinged on the creation of a system for online medical records. He’d observed that many existing online repositories were fairly uni-directional: people gather records, type stuff in, then they leave and forget about it. Lyle envisioned creating a more dynamic system where patients could create a medical record and then be automatically linked to others with shared experiences based on that record. The idea was to turn online medical storage into something more fun and social, but HealthKeep ended up turning in another direction after discussing it all with a HIPAA attorney. Setting up a site that stores patient medical records can get a bit dicey in terms of HIPAA compliance and so we’ve put the medical records part of it all on hold and made HealthKeep a totally anonymous site. It’s precisely because we don’t collect or store anyone’s names that we can ensure anonymity and stay in the green with HIPAA.
Medgadget: In addition to patients, does Healthkeep provide value to any other stakeholders?
Hwang: We also believe HK will provide value in health/medical research and to pharmaceutical and medical device companies through big data. HK can offer value in terms of giving people a safe venue to share health experiences and tell their stories, and for hospitals, medical centers, and research institutions, that can mean a lot of insight on patient coping mechanisms and strategies, the impact of mHealth on health status (we’re working on launching an app soon!), disease management techniques, and so on. Users also often share information on the side effects of medications, the experiences they’ve had at certain hospitals, the way they’ve successfully controlled conditions, and the specific difficulties of a condition that have the most significant impact on their lives. This information can paint a picture of the “collective patient,” and offer valuable insight on how to improve delivery of care, and eventually this could contribute to understandings of population-level trends (e.g., disease rates).
Medgadget: There are many companies operating in this space, such as WebMD and HealthTap. Which companies do you consider to be potential partners, and competitors?
Hwang: This is certainly an exciting field with a lot going on and while we share the space with many others, we don’t necessarily see ourselves engaged in direct competition with any of them. We distinguish ourselves from other social network sites by the fact that we’re premised on a strong platform of privacy and anonymity, and we further stand out as unique from traditional health community-based sites by diverging from the old forum-style set-up and creating a live, up-to-date stream on the site. This promotes more of a conversational style–something that’s happening right now, something active and engaging. You mention WebMD and HealthTap, and I think those are two great sites that we could of course partner with in the future on a number of initiatives but in a way, we’ve already built off of what they do: WebMD provides great medical news, which we incorporate into our live-stream news feed, and HealthTap represents a patient-to-physician network, an idea we incorporate by allowing doctors to register official profiles and participate within the patient-to-patient community (which many already have and do) .
Medgadget: How do you personalize your news feed to an individual’s health needs?
Hwang: When a user shares an experience the system tags their profile based on the content of their post. Users can also just manually add information (conditions, medications, symptoms, etc.) to their profile. News articles that go through our system are also tagged, and so we can then tailor the news feed to show articles based on tags that match each unique user.
Medgadget: What milestones are you aiming to reach this year? Next year?
Hwang: We’re starting to focus now predominantly on securing funding for our startup but we also have a number of partnerships we’re very excited about. For one, we’ve been in talks with a few large corporations about offering HealthKeep as an employee wellness tool. We know that the workplace can represent a significant venue for health promotion for many people, and corporations value HealthKeep because tools like it can promote greater productivity, higher morale, improved social cohesion, and so on. Along similar lines, we’re also speaking with a few large hospitals and medical centers about adding HealthKeep as part of a patient portal to help these institutions achieve better patient engagement. HealthKeep can represent a great way to encourage patients to become more active in their health maintenance and provide the space that can facilitate that engagement actually happening. While we also have some other initiatives in the works or on the back burner, cementing these corporate and hospital partnerships are major milestones we expect to achieve fairly soon.
More info: HealthKeep website…