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.
In the last 10 months, I’ve been working day and night to finish a book that could fill a huge gap regarding the practical use of social media in medicine and healthcare. Social Media in Clinical Practice was meant to introduce medical professionals to the digital world through real-life examples, suggestions and step-by-step instructions.
I’ve been teaching medical students and physicians about these topics for many years and they always came up with a final question: is there a practical book that could help us learn the meaningful use of social media? Now yes, there is!
I hope medical professionals will find it useful and e-patients will share it with their doctors.
Social media has been clearly changing the way medicine is practiced and healthcare is delivered. Medical professionals must be able to meet the special needs of technology-aware patients and use digital technologies in their work and communications properly. Each physician should find the tools that will assist them in their workflow, and patients need to be educated how to use the internet. It is the responsibility of medical professionals to contribute to this process. The constantly evolving digital world must be used in the practice of medicine to improve the care of patients. However, the only way to do so effectively is via evidence-based, meaningful and strategic use. Social Media in Clinical Practice provides practical guidance in this mission and is thus essential reading for all medical personal looking into approaching this for the first time.
Here is the table of contents:
- Social media is transforming medicine and healthcare
- Using medical search engines with a special focus on Google
- Being up-to-date in medicine
- Community sites Facebook, Google+ and medical social networks
- The world of e-patients
- Establishing a medical blog
- The role of Twitter and microblogging in medicine
- Collaboration online
- Wikipedia and Medical Wikis
- Organizing medical events in virtual environments
- Medical smartphone and tablet applications
- Use of social media by hospitals and medical practices
- Medical video and podcast
- Creating presentations and slideshows
- E-mails and privacy concerns
- Social bookmarking
When I wanted to include digital literacy in the medical curriculum, I worked really hard to get a chance for a pilot at a medical school with over 240 years of history. Now it has been running for 5 years. I teach medical students about the use of social media and how to deal with e-patients. Therefore when I came across and read the book, Let Patients Help, by E-Patient Dave, I knew this is what I was looking for.
I think we should make this book a must-read book in every medical school. To fulfill this huge mission, we need people working at medical schools who can work their way to the top and add it to the curriculum school by school.
If you work at a medical school or know someone who could help us, please let me know!
It was time for the FDA to step up and represent the very loud voice of e-patients as well. The FDA Patient Network was just launched to educate patients and advocates about FDA; recruit patients and advocates to serve in meetings and to speak at FDA events; and ensure that patients and advocates can express their concerns about FDA decisions. It’s a good first step.
We are the Patient Network, a part of the FDA. We work to bring the unique perspective of patients, family members, caregivers, and patient advocates to the decision-making processes of the FDA. Through the Patient Network, you can learn more about FDA and how it works, provide input in decisions about new or current medical products, and talk with FDA experts about issues and concerns that are important to you.