The concept of the “patients included act” was developed by Lucien Engelen of the REshape Center from the of Radboud University Medical Center in 2010. Conferences featuring actual patients as speakers or attendees could receive this prestigious badge.
Now, Prof. Dr. Melvin Samson, chairman of the Board of the Radboud University Medical Center in Nijmegen awarded the British Medical Journal a special “Patients Included” certificate to acknowledge and encourage their focus on the involvement of patients in the field of medical publishing. Well done!
Read the official announcement here.
Having witnessed the development of the globally known patient portal, Patientslikeme, over the last few years, I was not surprised to see the news:
PatientsLikeMe announced today a five-year agreement with Genentech, a member of the Roche Group, to explore use of PatientsLikeMe’s global online patient network to develop innovative ways of researching patients’ real-world experience with disease and treatment. The agreement is the first broad research collaboration between PatientsLikeMe and a pharmaceutical company and provides PatientsLikeMe the opportunity to expand its patient network in oncology.
“We envision a world where patient experience drives the way diseases are measured and medical advances are made. Genentech’s leadership and commitment to this mission brings us closer to having patients at the true center of healthcare,” said PatientsLikeMe Co-founder and Chairman Jamie Heywood. “With Genentech we can now embark on a journey to bring together many stakeholders across healthcare and collaborate with patients in a new way.”
It was a huge pleasure to announce that E-Patient Dave, the world’s leading e-patient, would present in my university course entitled Social Media in Medicine on the 5th of November in Budapest. The presentation took place as a part of the curriculum, but I made the event public so anyone could attend.
Dave gave a great presentation about how e-patients shape the future of healthcare and my students had some interesting questions. He was like a rock star!
Here is the recorded video, I hope you will enjoy watching it:
Being a medical futurist means I work on bringing disruptive technologies to medicine & healthcare; assisting medical professionals and students in using these in an efficient and secure way; and educating e-patients about how to become equal partners with their caregivers.
Based on what we see in other industries, this is going to be an exploding series of changes and while redesigning healthcare takes a lot of time and efforts, the best we can do is to prepare all stakeholders for what is coming next. That was the reason behind creating The Guide to the Future of Medicine white paper which you can download for free.
Please use the Twitter hashtag #MedicalFuture for giving feedback.
In the white paper, there is an infographic featuring the main trends that shape the future of medicine visualized from 3 perspectives:
- Which stage of the delivery of healthcare and the practice of medicine is affected by that (Prevent & Prepare; Data Input & Diagnostics; Therapy & Follow-up; and Outcomes & Consequences);
- Whether it affects patients or healthcare professionals;
- The practicability of it (already available – green boxes; in progress – orange boxes; and still needs time – red boxes)
Click here to see the infographic in the original size.
I hope you will find the guide useful in your work or in preparing your company and colleagues for the future of medicine.
I’ve been a huge fan of the Quantified Self movement for many years, I’ve been logging my sleep, my activities, scores of physical and mental well-being for 15 years every single day. When I recently saw an article about a neuroscientist who is getting a brain scan twice every week for a year to see how neural networks behave over time, I knew we are getting into a new phase in this area.
Every day, he tracks his mood and mental state, what he ate, and how much time he spent outdoors. Twice a week, he gets his brain scanned in an MRI machine. And once a week, he has his blood drawn so that it can be analyzed for hormones and gene activity levels. Poldrack plans to gather a year’s worth of brain and body data to answer an unexplored question in the neuroscience community: how do brain networks behave and change over a year?
Moreover, according to mobile health and wellness sensor reports, in 2017, 515 million sensors for wearable, implantable or mobile health and fitness devices will be shipped globally, up from 107 million in 2012!
We can expect that in a few years’ time, patients will be able to measure everything about themselves from blood count and blood glucose content to ECG and even genomics data. Are medical professionals, payers and pharmaceutical companies ready for such a world?
Of course, not, but I’m trying to prepare them offline and online.
As a huge fan and supporter of e-patients who want to use digital technologies and the information they find online in their health management, I don’t like news articles speaking against them without explanations and data.
The healthcare social media community has been discussing a study that concluded patients who wanted to participate in medical decision making had higher bills. It might predict that e-patients will have higher bills as well. Let’s take a look at it:
Analyzing the data, the researchers found that nearly all — 96.3% — wanted to receive information about their illnesses and treatment options, but that only 28.9% said they had a strong preference for making their own decisions about their care.
Those patients had longer hospital stays, by about a quarter of a day on average, than patients who preferred let their doctors take the lead. They also had greater hospital costs ($865 more, on average.) By and large, people who were more likely to participate in medical decisions were better educated, and more likely to have private insurance coverage, than the rest of the patients who were surveyed.
You see? It says patients who had a strong preference for making their own decisions about their care. E-patients are partners with their doctors, not making medical decisions themselves alone. That’s the difference.