When we hosted the Berlin Health 2.0 summer party, we took the opportunity to ask the community about patient empowerment & the big trends in digital health.
The mashup of health and technology has completely changed the way the healthcare industry operates. We have more efficient systems, better access to information and personal data, and a wealth of online support networks that allow both patients and physicians to gain knowledge and share experiences.
In light of this, since 2011, our participatory health Director Ulrike Anders has been bringing together technology enthusiasts, developers, students, physicians, nurses, pharmacists, patients, designers, social workers and more to form the Berlin Health 2.0 network. Part of the international Health 2.0 movement, the group regularly meets to share and discuss ideas for improving patient care, focusing on innovations in the delivery of healthcare and health related technology.
On August 17, we had the pleasure of hosting the group’s summer party at our Berlin studio, which was a great night! Not only was it good fun, it also gave us the opportunity to speak to some of the members about patient empowerment – participatory health is one of our areas of interest after all – as well as where they see the industry headed and who’ll be driving the change. Here’s what they had to say.
Len Starnes, Consultant, Len Starnes Digital Healthcare Research and Consulting
Len Starnes is a long-time member of the Health 2.0 group. He’s an industry expert who provides strategic and operational support to the pharma and medical technology industries, government healthcare authorities, medical societies, healthcare venture capitalists, doctors’ social networks, and management consultancies. He has over 18 years’ experience under his belt, directing digital strategies within the pharma industry, notably with Bayer and Schering. In our casual party chat, Len told us that the biggest impact on patient empowerment is without a doubt big data.
“More and more data is being collected, especially now with the amount of devices and healthcare trackers we are using. But not all of this data is being used the right way; we need to make sense of all this data and understand what it means. The combination of tracking data and the real-world data movement is revealing things we never knew before in healthcare, and if we could better understand how to use it, it could reveal a great deal more,” he said.
“As a patient I contribute my own data to websites like patientslikeme. I also go onto the website to see what the data and aggregates show about behaviors and how patients react to certain drugs. I’m really fascinated by this kind of data.”
I think we as patients are no longer willing to simply sit across the table from a doctor and say ‘yes doctor, no doctor’.
We also discussed the shifting role of patients and how with more information at hand they are more inclined to seek different options and opinions.
“I think we as patients are no longer willing to simply sit across the table from a doctor and say ‘yes doctor, no doctor’. More and more patients are questioning doctors. We’re more prepared to ask various doctors for their opinions, and feel confident asking those questions.”
He gave the example of e-patient Dave (Dave deBronkart), who became “the world’s most famous patient” after blogging about his experiences with different cancer treatments. Dave was diagnosed with kidney cancer in 2007 and was told he had 6 months to live, but he took a proactive approach to his illness, conducting research and choosing to take part in the clinical trials that got his condition under control. He’s since gone on to become a noted activist for healthcare transformation through participatory medicine and personal health data rights; he also founded the Society for Participatory Medicine.
Philipp Butcher, VP Sales & Marketing at Doc Cirrus GmbH
Philipp Butcher from Doc Cirrus, the evening’s sponsors, provides patient management software and communication tools that use a hybrid cloud setting to securely store data. He discussed how patients are keeping the pace of digitization, saying that they are the early adopters of digital healthcare and without them many developments wouldn’t be moving forward.
“There will be a fundamental change in how patients perceive themselves, and in turn how doctors perceive themselves. The role model will completely change with new technologies. I think that’s the basic trend and fundamental change at this point in time, but it’s more of an evolution rather than a revolution,” he said.
“The patients are absolutely driving the change in healthcare, but the question is: how far do they come in pioneering new stuff without the system and the health professionals?”
Thaddäus Hocotz, Doctor
Thaddäus Hocotz recently completed his studies in Prague and is working as a doctor in Berlin. He says there is still a way to go before the right digital tools make their way into doctors’ everyday routines.
“Right now, there needs to be a better system. It would be amazing in the future to have a general data space, a cloud, where all patient information would be available. Right now, working in a hospital, when you get a new patient you spend an hour calling the patient’s specialists and past doctors asking for this data and information to be sent. For this sort of change to occur it won’t come from the doctors as we don’t have the time. This sort of change needs to come from companies.”
Community and patient voice is something that’s already making a huge impact right now, but in Germany we are quite far behind.
Bastian Hauck, Founder #dedoc
Bastian Hauck is on the board of the German Diabetes Association, and started the German chapter of the diabetes online community #dedoc four years ago – the largest platform in Germany for type 1 diabetes. It has become the go-to place for people to share experiences and ask questions around living with a chronic illness. They even host a weekly Tweet chat to further facilitate open conversation and provide an opportunitiy to address issues with people other than your doctor. He says it’s this kind of dialogue that’s having the most impact on patient empowerment.
“Community and patient voice is something that’s already making a huge impact right now, but in Germany we are quite far behind. You live with the condition every single day, and you need support not only on the medical side but also on the emotional side, and I think that’s the thing that has been neglected for many years, even decades,” he said.
“There needs to be more of a dialogue, patients need to become more informed. That can have a lot to do with social media and social networks. Peer-to-peer networks and support isn’t necessarily anything new, but so far it has primarily been linked to meeting once a month with a couple of people to sit around and talk, which is a bit cumbersome. But if you do it on social media you can do it on a daily basis or even hourly basis. Social media is just a means to an ends. It makes it possible to have these kinds of conversations in a way that has not been possible before.”
Through engaging in communities such as Berlin Health 2.0, we’re constantly gaining new insights directly from industry players about where there are gaps or opportunities for improvement. It’s great to be able to share ideas and experiences to continue to build relevant products and services around participatory health. Thank you to all those who came to the party and made it such a great night. You can find out more about the Berlin Health 2.0 group and its upcoming events at the meetup page.