Last Friday, April 3, I had the honor to speak at a panel titled “Healthcare Innovation Online” alongside Dr. Sean Khozin, cofounder of Hello Health. This was an incredible honor and an opportunity for which I want to thank Adam Kaye, one of our members. He is an MBA/MD candidate in Yale and suggested to the committee organizing the conference to have me invited to it.
The night after the conference, I had a chance to relax and chat with him and Kerri Morrone, who drove through town.
Here are some of the notes that I used as a reference during the panel…
WHAT IS TUDIABETES?
TuDiabetes is a social network for people touched by diabetes. We are one of the programs of the Diabetes Hands Foundation. We welcome patients with all types of diabetes, their family/friends and caregivers as well as health care professionals involved in the field and pharma professionals (provided they don’t use the community for commercial purposes). We believe everyone is directly or indirectly TOUCHED by diabetes, to the extent that it is hard to argue with the fact that it IS an epidemic in the US and beyond.
Diabetes Statistics (from International Diabetes Federation):
- In 2007, the five countries with the largest numbers of people with diabetes are India (40.9 million), China (39.8 million), the United States (19.2 million), Russia (9.6 million) and Germany (7.4 million). US alone now has more than 24 million cases, so most likely there has been an increase worldwide too.
- Another 2007 figure (most likely dwarfed by now): each year 7 million more people develop diabetes.
So that is who we serve: people that get diagnosed with diabetes and those surrounding them.
TuDiabetes Statistics (growing @ approx. 13%):
- Launched March 2007.
- Nearly 8,000 members (majority with type 1 diabetes, though proportion of patients with type 2 is increasing)
- US: 75%; Canada: 7%; UK: 4%
- More than 60K unique visitors every month
EsTuDiabetes Statistics (growing @ approx. 20%):
- Launched August 2007
- Nearly 3,000 members (also majority type 1 diabetes, more evenly distributed than in TuDiabetes)
- Mexico: 30%; Spain: 20%; Venezuela: 9%; Argentina: 9%; Colombia: 9%; US: 8%
- Narly 35K unique visitors every month
WHY IS IT IMPORTANT?
Trying to answer this question through the lens of the three key issues being addressed by the conference:
1. How do we provide better care to more patients while keeping costs under control?
How many of those attending the session feel a social network where patients interact with one another is something that should be considered part of the health care system in some way?
Nobody can argue with the impact social networks have in our lives. Just think of the ones you may be a part of. And if you are not a part of one, just ask around you (perhaps those in their 30s or younger). We have multiple accounts (Facebook, MySpace, LinkedIn, etc.) and we don’t only use social networks for fun any more: they have a social impact (think of the Causes application on Facebook), they can impact our ability to network for job search purposes (LinkedIn comes to mind as the perfect example) and they are beginning to have a serious impact in health care, whether we want to accept it or not.
Patients are going online to get three things in connection with their health:
- Services: think Hello Health. We are partnering with Children’s Hospital Boston, through which we will be offering a valuable service to our members in the coming weeks (stay tuned!)
- Information: think Google, think Organized Wisdom, think HealthLine, think HealthLibrarian. Google is an outlet too for access to services (just discussed) and support sites (to be dealt with next).
- Support: this is largely where we fit in. Support online communities complement the picture. Patient-centric communities (and health blogs) are not as a substitute of traditional health news outlets or to traditional or online-based healthcare service providers, but rather a complement.
2. What are innovative public and private solutions to this problem?
Online communities are much easier and less expensive to set up than before. This doesn’t make them something that can be operated on “auto-pilot” but they can scale much more conveniently than it used to be possible just a few years ago. This is in no small part due to the advent of the so-called Web 2.0, which has taken on the shape of Health 2.0 in the healthcare space. There are health-centric online communities appearing in the for-profit sector almost on a daily basis. There are not as many comparable ones in the nonprofit sector (we are one of the few).
Why do online health communities help patients? As long as they are run with the patient as the main goal, patient communities help bridge a HUGE gap which gets even more visible when you live with a chronic condition like diabetes. You get to see your PCP or your endocrinologist for MAYBE 15 minutes at a time, every 3-4-6 months (if you do it -uninsured patients are not even getting the treatment they need because they sometimes cannot afford it). In between appointments there are SO many questions that cross your mind: “Why might my BG numbers be so high?” “I wonder how do others glucose levels do with this food…”
Patient communities are trusted with the answers to these questions because they come from someone who “gets it,” someone who is either living with the same condition or has a loved one that does.
These patients become empowered with information and knowledge that they can take back to their doctors. Example of LADA case originally diagnosed (and unsuccessfully treated) as type 2 diabetes.
3. What sort of opportunities and challenges will potential healthcare reform bring?
Beyond healthcare reform, here are some opportunities and issues that we need to be aware of as solutions like TuDiabetes start becoming more ubiquituous:
Opportunities:
Patient-generated “healthcare”: I like to think of this as a way for patients to collaboratively come up with very valuable assessments (as patients, not trying to be physicians) of drugs, devices, etc. which can become an incredibly useful resource to other patients.
- For example, we routinely receive lots of traffic from patients who are evaluating insulin pumps and continuous glucose monitoring as treatment options. They want to read what others have experienced, what their thoughts are on the best options, etc.
- We were able to collect valuable feedback as part of the Health Care Community Discussion that took place over the holidays.
- Another direction community-generated content takes in TuDiabetes is in the form of awareness programs like the ones we’ve created:
- Word In Your Hand (currently licensed to OneTouch, which has resulted in the Global Diabetes Handprint campaign that generates $5 in donations to diabetes charities for every submission of a photo of a hand with a word on it, describing how the person feels about life with diabetes).
- Drawing Diabetes: which resulted in this awareness video, with nearly 50K views on YouTube and other channels.
- Diabetes Supplies Art: which resulted in our most recent awareness video.
- No-Sugar Added Poetry: which will result in a diabetes poetry book in the Fall (anyone interested in helping finance this project?)
