Interview with founder of health based social networking site
Today on Journeying Beyond Breast Cancer, I interview Michael Dornan, founder of social-medicine.org, a website that hosts multiple social networking sites for a variety of medical conditions, including breast cancer.
JBBC: What can you tell us about your website social-medicine.org?
M.D. Social-medicine.org is a health based social networking site that helps people suffering from a variety of health conditions, including Breast Cancer, to globally connect, help and share information with others in similar situations, by focusing on bridging the gap of patient-to-patient communication, and patient-to-practitioner, with all the social networking features and functionality expected in today’s society.
Social Medicine fosters community support; real people in similar situations come together, to circumvent negative feelings like disconnection and loneliness, and focus on improving self-esteem, understanding, communication, relationships, and peer support.
As a psoriasis sufferer I know first-hand how hard it can be to deal with an illness without that all-essential support from people who truly understand. After spending years managing my condition alone, I turned to the Internet for help. The sheer number of forums, blogs, and communities out there in which psoriasis was discussed by fellow sufferers was astonishing, but I found that it wasn’t a personal experience. My simple goal was to give psoriasis sufferers a voice, a sounding board, and a close-knit and supportive community for people who understood, what it was like to live with the condition. Soon Social Medicine was born, a platform for those who suffer from a range of illnesses and conditions, now have a community driven support network, and an avenue for organisations who may like to reach out to people via this platform or support its development.
JBBC: How do you think the growth in new social media platforms and social networking has changed the landscape for those who are seeking information about a health related condition?
M.D. In today’s society, we are moving on from forums and blog sites. Forums are seen as static, where the information stored is already considered dated, and lacks a more advanced personal experience or instant communication the world has started embracing. Social Medicine is about the personal experience, offering instant communication on a global scale.
There are also increasing demands of consumer driven health content. It is seen that 48% of people with cancer reported that they had insufficient information provided by their physicians, while 20% were not satisfied with the information given and 39% of women with breast cancer indicated that they “wished that they had help with knowing what questions to ask.” However, dissatisfaction with information provided is not the only reason why patients were turning to the Internet.
There is a great need for more information. Patients want to know what other patients have done, used or experienced with their condition. The provision of information provided to patients has been shown to help them gain control, reduce anxiety, create realistic expectations, promote self-care and participation, and generate feelings of safety and security. The satisfaction with information provided has been shown to correlate with quality of life. People, who feel satisfied with the adequacy of information given, are more likely to feel happy with their level of participation and in the overall process of decision-making.
JBBC: From your experience, what do you think patients are looking for from healthcare both on and offline?
M.D. Patients are looking for patient driven health content that outline their real life experiences. There are increasing demands in medical content, written by real people suffering from real illnesses. Patients want comfort, and talking to others suffering from the same condition provides peace of mind, knowing that they are not alone. There are also increasing demands of supportive health communities, something that patients have been wanting for a very long time. Social Medicine provides a good source of information and, psychological and social support by others within the community. Social Medicine provides a sense of belonging to the health community, eliminating loneliness and disconnection.
But that is only one side of the coin, health professionals can and are jumping online to participate, the next stage is allowing them to interface with ePatients, collaborate and improve communication.
JBBC: Do you think more physicians and healthcare organizations should use social media?
M.D.Yes, physicians and health organizations can learn a lot from what patients are discussing about their illnesses.
Medical professionals are encouraged to join the social revolution and begin to communicate with real people suffering from conditions on a social level. They can learn from patients and help them deal with their condition by finding out how they are coping, what they are dealing with, right down to sharing content to help with diagnosis or understanding of severity, such as video and photos.
The activity found on Social Medicine can accelerate the speed of clinical research of certain conditions by collecting and analysing discussions, be it live chat, wall posts, blogs, or survey data, and further informing patients about the relevant products to be using for their conditions.
Medical professionals can better understand the social aspects in dealing with conditions on a global scale. We’ve lost the ability to socially interact with people suffering from medical conditions since the small community doctor disappeared, and now we have an opportunity to bring that back, albeit on a different scale, but that’s the way of the world and health certainly needs to keep up.
Social Medicine is all about patient collaboration and engagement. Illness sufferers know more about themselves and how they are feeling, than any physician. But this is not to say that there is a need to remove physician from the picture. Physicians cannot avoid the noise their patients are making with other patients; they will simply need to get involved and join the social revolution.
Social Medicine’s online health communities show no geographical or transport boundaries; anonymity from stigmatizing, embarrassing, and sensitive issues; increasing self-disclosure; and encouraging honesty. Even people with rare diseases can find peers online. The anonymity of online communities may facilitate the participation of certain people, who may be culturally and socially conditioned not to ask for help and support. For this very reason, physicians can see the online communities as a great benefit.
JBBC: Finally, what are your long-term plans for Social Medicine. You are at the start-up stage now but how do you see it developing over the next few years?
M.D. Functionality wise, the current functionality seen within Social Medicine allows you to build a profile, a profile that allows you to personalise yourself in your community; make friends, upload your photos and videos, and write on walls, chat live to others one to one or in groups, or create and/or comment on the blogs within your community, we also have a feature called Match, similar to how a dating sites work, not matching you with a potential partner, it matches patients with someone who is similar to you (age, sex, location, climate, diet, skin type, blood type etc).
Social Medicine has a reporting and analytics layer. The medium to long-term intention is to share aggregated data with pharmaceutical companies and medical device makers, who can help improve health and make a difference to healthcare and patients.
However more functionality is ready to deploy such as a mobile application, events creation, creating groups and polls, and a condition specific product store.
The plan moving forward, is to implement Social Medicine’s vision, to better understand how people are connecting and sharing information about their medical conditions, the various treatments and products they are using. The data found will then be turned into information and translated into knowledge, accessible to medical practitioners to help patients on a global scale.
Social Medicine is looking to engage with medical professionals to add value to their own brand and generate brand awareness when interacting with patients. When patients begin to socially discuss products, their condition and treatments, this level of information is captured and is an invaluable source of information for medical professionals. Capturing this level of information allows medical professionals to narrow in and geo target patients on their location, condition, or other demographic characteristic, and consult with them in real-time.
JBBC: Thank you Michael for the stimulating discussion today. I think initiatives like social-medicine. org is the way forward for health communities.
Do you have anything to add to this discussion? Please share your insights in the comments section below.