(Editor’s Note: John Nosta writes for Forbes.com)
STAT Ten is intended to give a voice to those in digital health. From those resonant voices in the headlines to quiet innovators and thinkers behind the scenes, it’s my intent to feature those individuals who are driving innovation–in both thought and deed. And while it’s not an exhaustive interview, STAT Ten asks 10 quick questions to give this individual a chance to be heard.
(Editor’s Note: John Nosta writes for Forbes.com)
STAT Ten is intended to give a voice to those in digital health. From those resonant voices in the headlines to quiet innovators and thinkers behind the scenes, it’s my intent to feature those individuals who are driving innovation–in both thought and deed. And while it’s not an exhaustive interview, STAT Ten asks 10 quick questions to give this individual a chance to be heard.
More Read
Michael Seres
Michael Seres is a patient leader involved in creating and implementing patient engagement strategies via digital technologies. He is also the inventor of the Ostomy sensor known as Ostom-i™ Alert Sensor and is founder of 11Health. Having suffered with the incurable condition known as Crohn’s Disease Michael went on to undergo a rare intestinal transplant in the UK. He has used his experience to become a published author and speaker but his real passion lies in using digital technologies to develop peer to peer interaction. Michael is eager to learn and connect with you all and can be reached via twitter @mjseres, blog or website www.michaelseres.com
#1. Can you tell us a bit about your diagnosis and briefly about your patient journey?
I was diagnosed with the incurable bowel condition known as Crohn’s Disease aged 12. After over 20 operations I was left with 60cm of bowel and went in to intestinal failure. Being unable to eat or drink and having to be fed intravenously I became only the 11th person in the UK to undergo an intestinal transplant at hospital in Oxford, England. In the build up to transplant I turned to the busiest doctor in the world to find out more information but “Dr” google didn’t have much. I started my own blog and eighteen months later is has over 76,000 followers and is used by transplant teams, medical students, patients and carers as a real time insight into the transplant. I have used that experience to develop patient engagement strategies for hospitals, pharma and patient associations using digital technologies.
#2. How do you see the role of the patient (and caregiver) changing over time?
For me it is all about going from passive to interactive. Historically patients sat and listened to what doctors had to say and simply followed what they were told. Now the role of the patient and caregiver is changing. Technology has created change. Patients have access to more information, that enhances their knowledge base and changes the whole relationship between patient and caregiver. The term “e-patient” has become a hot topic yet actually I believe that access to information means that every patient is empowered, can be educated and informed or whatever “e” you wish to stick in front of a word. However it is to what degree the patient chooses to use that empowerment that counts. Over time I believe the relationship will become more of a collaboration, more coproduction of healthcare plans and an e-patient will become an i-patient. I-patients are interactive patients who no longer react to what care givers tell them but they truly interact and participate in their own health.
#3. In your experience, has your expanded role been embraced by the health care professional? Do they really wish to partner in your care or guide it?
I am very lucky. My transplant team are very open minded to change and to embracing technology. For example, my surgeon and I text each other several times a week. Together we have created skype clinics that prevent patients from having to travel miles to see the surgeon when it is simply a check-up. I often receive blood results via DM on twitter or text and my surgeon now runs tweetchats. Check him out @TXSurgeon.
From day one both sides of the healthcare coin saw this as a partnership. I believe that it is now incumbent on patients to play an active role in their healthcare treatment. We share articles, you tube videos and other useful information online. Recently I was due to have a new transdermal cream but no one was certain what the benefit was. My team asked me to go out to one of my online groups and ask for feedback. That would never have happened if they were not prepared to embrace change. I was diagnosed shingles in my right eye. Except it wasn’t my surgeon who diagnosed it – no it was a friend on a LinkedIn group who recognised the symptoms and solved a problem.
#4. How has the “collective experience” of you and other patients help inform your care and education?
I passionately believe in the value of peer to peer interaction as part of healthcare. In my opinion your doctor is generally the most trusted source but after that hearing from a patient who has experienced similar issues to you is incredibly powerful. Finding trusted sources and resources can be a minefield for patients. However a patient is generally seen as another trusted source and you can often find out far more from patients than you do from your physician. Practical hints and tips about taking meds, how to inject yourself, how to cope with new complications such as an ostomy and even side effects of certain drugs can often all be found out by talking to other patients. As for education I actually believe that this is an area where doctors are missing out dramatically. All this collective experience is data – data that should be used in the correct way to assist with future treatments. Why is it not being accessed? Are doctors scared? Do patients block doctors from entering their space? For me this interaction has to be completely open. If we share we learn.
#5. What has the role of social media played in connecting and informing you as a patient?
Social media per se has changed the way we interact with people, for patients that is no different. Every day I read of a new social media tweetchat, a facebook group, an online community using social media to express themselves. Hashtags have almost become a patient directory. Campaigns such as facebook’s organ donor program increased registered donors 21 fold in one day and both google and twitter claim that they can predict health trends. Social media is already connecting patients and I believe that trend will simply grow. For example bowel disease one global family was set up on World IBD day. Over 800 patients connected within 12 hours and the group continues to provide support for patients. This is one of hundreds of similar support groups on Facebook that enable patients to have open, honest and often private conversations through social media. Symplur runs a hashtag directory with over 6,000 health conditions discussed on twitter.
#6. Where has the most robust information / dialogue come from? Other patients, physicians, pharma?
I believe that patients are ahead of the curve here. Pharma would like to engage more but often regulatory issues prevent them from true interaction. As for physicians for me it boils down to whether they can trust their instincts and take the plunge by going on line in to a world that is probably alien to most. There are so obvious stars out there on all sides. @TXSurgeonX and WendySueSwanson MD are two leading physicians whose information and ability to articulate in a manner than patients engage with makes them robust and trusted sources. In the UK we have a number of tweetchats that dig deep in to real issues that arise in healthcare on a weekly basis. #nhssm brings together physicians, patients, hospital managers and a plethora of engaged parties for truly robust interaction. However if I had to nail my colours to the mast I would say that actually patients provide the best information and truly engage.
#7. Have the innovations in digital health impacted your life? Have there been an real and tangible clinical benefits?
Post-transplant I would say that digital health has not just impacted on my life it has become my life. It has not only changed the way I engage in my life but it has become a way of life. Initially I saw digital technologies as a communication vehicle only but now I have come to understand how great an impact it is having. The ability to engage in real time dialogue with your doctor has been life changing. Simply things like receiving my blood results on a text message with a clear message of what to do next have had a huge impact. Perhaps the greatest benefit and gift that I can give as a patient is if my own digital health has an impact on another patient. As a direct result of my blog 2 patients have successfully undergone life changing bowel transplants and at least 2 others are being worked up for surgery now. These would never have happened had they not read the blog, contacted their own physician’s to show them that this procedure was possible and then convinced them to send them to see my surgeon.
One of the big issues post-transplant is the impact of anti-rejection medications on your kidneys. Your creatinine levels indicate kidney function and also give you guidance as to whether you need to increase your fluid levels. Patients now connect with each other and openly discuss levels and at what point do they find they start to dehydrate. We learn from each other what markers to look out for, whether we can take enough fluid by mouth or whether to put up intravenous fluids. All of this communication is done on line either via social media or video calls.
#8. Can patients go the next step and actually innovate in the digital health space? Anything that you can suggest?
The simply answer is yes but it isn’t easy. All too often I hear, read and see of new apps, new websites, new technologies that have been developed by quite brilliant people for use by patients. The only problem is that they often haven’t engaged with patients in the process. Being a patient isn’t easy especially for those like myself who have long term chronic conditions yet I believe we are a vastly untapped resource who should be embraced as part of innovation. Patients can be entrepreneurs too. Often out of our own experiences innovation can happen. I have recently launched a company known as 11health & technologies. When recovering from transplant I was faced with coping with an ileostomy. Not only did I have to cope with bags/pouches filling without me being aware but doctors wanted to know output volumes and times and asked to create endless spreadsheets for them to review. Nurses were forever connecting me to overflow bags to avoid unnecessary spills. I just assumed this process could be automated and “Dr Google” would find a solution. When I discovered nothing existed I set about creating sensor technology and the Ostom-i™ product that now exists. No longer will ostomy patients have unnecessary accidents. All the data gathering is automated on a free mobile app and then stored on our website for patient and clinical access.
It was an incredibly tough but exciting 9 months going from an idea in a hospital bed, to prototype, to securing funding and finally being able to launch a product. Above all the thing that stayed with me was that this was developed by a patient for a patient. So can we innovate of course we can. Patients are powerful people and a powerful underused resource.
#9 In reality, do patients who sit in waiting rooms and lie in hospital beds actually care about digital health?
This is a great question and in my experience it would be easy to say no they don’t. However let’s explore this a little deeper. In the waiting rooms that I have sat in for 30 years and in the hospital wards that I have been on the last 10 years has started to see them use one thing the whole time. Their mobile phones. If it is not their phones it’s a tablet or laptop. Generally they are using them to communicate about what is happening to them. They are posting Facebook messages, sending texts, sending tweets. In most cases it is often about what their doctor has said, how long they have been waiting, whether the call bell has been answered and they are using digital technology to do all of this. So I would argue that actually patients are engaging in digital health even if they do not realize it.
Whether they care; well if they are engaging then they have to care. The NHS trust I am treated in covers a number of hospitals. In some they sends texts messages as a reminder of appointments. This is great engagement and patients react very positively. However the main hospital I go to sends out appointments by letter. These arrive after my appointment is due. So maybe the question should be; do the hospital administrators care about digital health because patients do?
#10. What’s your take on the future of health? Are there any specific areas the peak your interest?
I believe that digital health is on the cusp of taking off. We all attend amazing conferences and listen to incredibly people tell us that digital health is the future. In my view it is on the ground with patients where you really get the sense of what is happening. Self-management is a big growth area. Healthcare systems are buckling under the weight of people living longer, new medical breakthroughs, rising costs, the list could go on so self-management become vital. We are seeing a surge in online tools to assist patients here with sites such as crowdhealth arriving quickly on the scene.
Self-monitoring is constantly in the news. New apps, new technologies and new sites provide patients with every way to monitor themselves. The NHS even has its own apps library although I think the real powerhouses in this area will be Google and Apple. Google Glass has the potential to transform all sorts of treatments. Self-monitoring relies on patients to start to take control of their health in ways we never used to do. This change in dynamic has to be the biggest shift in healthcare. Patients will become more interactive, they will often know more than the doctor that is treating them. That raises the question as to how the doctors of the future will now have to change. In England there is a see change to public patient involvement in all aspects of health. I am involved in discussions and take lectures and tutorials at Oxford & Cambridge medical schools about patient involvement in all aspects of teaching. The future of health is in the hands of the doctors that are now in medical school. However the real future lies with a phrase I enjoy using “Powerful People”. Those powerful people are patients and we can change the world. That is something that excites the hell out of me.
