Today, first in a three-part series of guest posts addressing a duo near and dear to my heart: Technology & Diabetes.
Silja Chouquet is CEO of the Switzerland-based social media consultancy Whydot and author of the leading blog WhydotPharma, which is all about "creating patient-focus through social media." She believes that social media has the power to "profoundly change the way healthcare is delivered." When I asked Silja to comment on what's happening in particular in the diabetes social media sphere, what came back was essentially a major commendation of the work we've all done as D-advocates on the web — a nice pat on the back and big motivation to keep on advocating!
A Guest Post by Silja Chouquet of WhydotPharma
The way diabetes patients use social media is quite remarkable: Deeply caring online discussions on living with diabetes result in concrete advice for patients looking to manage their condition better. Incredibly smart uses of social media technologies drive no-nonsense monitoring for those trying to improve their health outcomes.
Diabetes patients thus use online information intensively and extensively to make more informed health choices for themselves. Consequently, the diabetes conversation on social media is impressive: This month it was seven times larger that the healthcare reform debate, for example!
Only trust can spark such a powerful conversation. Only dedication can produce such a tight-knit community. Surprisingly though, the diabetes community is not at all closed or exclusive to the outside world. "Diabetes patients are THE archetype e-patients!" Dave deBronkart, who is a prominent e-patient himself, told me when I spoke to him about writing this post. "Due to the nature of the disease, diabetes patients are used to continuously capture their outcomes as well as to share this information with their broader care team."
As you can see above, the online community spreads the knowledge harvested online to the "offline" participants in the healthcare system, including the industry.
Anyone trying to tackle the tricky ups and downs of diabetic life depends on a quasi-symbiotic relationship with devices and drugs. Whether he or she likes it or not, improvements to quality of life with diabetes are directly linked to improvements to the drugs and devices available. The diabetes online community has empowered itself to lead happier and healthier lives and it relentlessly drives the improvements needed to achieve this.
Obviously, I believe that this new form of patient empowerment will bring about a revolutionary re-evaluation of the business model — moving healthcare companies from product-producing machines to patient-centric service providers. Here are some examples illustrating how social media has and hopefully will in the future change the game for healthcare companies in diabetes:
• Innovation: Amy's Design Challenge has demonstrated that open-source innovation which includes patients from the start can lead to concrete product developments. In the future, healthcare companies should use social media to integrate patient input in their development programs. They should interact with the patients in their trials to gather their feedback and make adjustments to their drugs whilst developing them.
• Access: Kerri's odyssey on how to get reimbursed for continuous glucose monitoring during her pregnancy illustrated that access means two completely different things to patients and companies. For healthcare companies, access means a drug or device got regulatory approval and a price was negotiated with authorities. For patients, access to treatment means they are prescribed the drug or device that best fits their needs and are able to afford it. In between these two shores of definitions lies an ocean of opportunities for companies to provide information and services — and social media might just be THE best channel for it.
• Adherence: Most drugs and devices are developed in scientific straight jackets of ranges and numbers that are meaningless to patients. More and more companies will have to convince patients that using their product at the exact dose and frequency does make a difference. The new TuAnalyze launched by TuDiabetes is an excellent illustration how smart social media use can capture data on real-life outcomes, creating a great body of evidence as well as a fantastic support system for patients.
Finally, note that I left out the most discussed use of social media by industry: product promotion. I did so for two reasons: 1) It is discussed plenty already to the detriment of much smarter uses of social media, and 2) I believe a promotional approach to social media is never going to work, because it will not meet the needs of diabetes patients online.
The relationship between diabetes patients and healthcare companies is evolving and will undergo radical changes in the future. I am not able to predict at which speed, but I am certain that these changes will drastically improve diabetic care... so let's keep moving.