Digital health and rare diseases

Contributed by Virve Aljas, Manager, Employee Communications & Engagement, Ontario Medical Association

I have a vested interest in improving digital health systems. The information housed across a number of systems within different institutions can be applied directly to research that could save my life. Full disclosure, I work for the Ontario Medical Association, of which OntarioMD is an affiliate. I’m writing this blog through the lens of a patient with a rare disease, navigating a complex health care system. You’ll also read the perspectives of two physicians who are deeply involved in transforming digital health to inform their research.

I have a rare liver disease called Primary Sclerosing Cholangitis (PSC), which affects roughly 21 in 100,000 men, and 6 in 100,000 women. It progressively inflames and scars bile ducts to the point that the liver ceases to function. No one knows what causes PSC, and there is no cure. If the disease progresses to a certain point, liver transplantation is currently the only solution.

You might not expect me to follow that up by saying that I feel incredibly lucky. I’m fortunate to live in a city where I have access to multiple centres of excellence in gastroenterology, hepatology and therapeutic endoscopy. I can access care by boarding the subway, while some patients I know have to board a flight to see their specialists.

These hospitals have some of the most advanced medical technology available. However, like many patients in Toronto, I’ve made the familiar trek across University Avenue from one specialist to another with an armful of my medical records on paper, because their EHR systems can’t communicate with each other.

Digital Health Information and Research

Another way I’m lucky as a patient is that I’m based in the same city as doctors who are researching ways to cure my specific disease. If they based their work on data from solely their local patient pool, their sampling would be relatively small. You can imagine that patients would want them to have access to as much data as possible to find common trends.

Another layer of complexity is added in this case, when you consider that over 75 percent of PSC patients also have ulcerative colitis. PSC researchers and their peers in gastroenterology are keen to collaborate in order to find out more about this relationship. Unfortunately, good intentions only take us so far.

Like many rare disease groups, the PSC patient community has self-organized to create resources like a voluntary patient registry, online forums, annual patient conferences and fundraising to support research. I’m privileged to use my voice through a forum like this blog, but patients would love to find other ways to help move digital health and research forward.

We enjoy open communication from clinicians like Dr. Gideon Hirshfield and Dr. Aliya Gulamhusein who are leading the charge to find a cure. Their perspectives are below.

Dr. Gideon Hirschfield

MB BChir PhD FRCP (Lon), Director, Autoimmune Liver Disease Programme, Toronto Centre for Liver Disease, Lily and Terry Horner Chair in Autoimmune Liver Disease Research

“Electronic health in Ontario has a long history and some recent positive advances. We now have, albeit a slow and not easy to use, system of getting results about our patients through the ConnectingOntario ClinicalViewer.  However, as academic clinicians, we often find ourselves with a focus on diseases that frequently don’t have very good treatments at present. It is therefore quite discouraging to see barriers to using existing electronic resources for simple observational research.

As an example, PSC is a rare disease, very impactful, and has no present therapy. Our patients live all over Ontario and we use tools like ConnectingOntario for their clinical care to reduce the burden to them, every day. We can see blood results, radiology investigations, etc. However, if we want to cohort and learn more about our patients, we cannot use ConnectingOntario data in that way, as that is classified as using the data for research. To be honest, it is hard for us to explain this to patients who live with an impactful disease with no therapy.

No one is asking for unrestricted academic privileges that discard privacy concerns. But if you had a rare disease, and you knew that simple research to learn more about the nature of the disease is hampered by poor access electronically to existing data already used in your clinical care, you might question whether it was a small win for all to proactively solve the problem. Certainly, as academic clinicians develop solutions to working together clinically and for research, collaboration across institutions is one priority we really want addressed as e-health expands.”

Dr. Aliya Gulamhusein

MD, MPH, Assistant Professor of Medicine, University of Toronto, Clinician Investigator, University Health Network

“Chronic diseases are increasingly complex and patients with rare, multi-system diseases often ultimately seek care in highly specialized centres. Rare diseases like PSC affect multiple organ systems including the bowels, liver and biliary tree, and are often managed by distinct clinicians who specialize in management of these individual systems, with each clinician contributing an important element to patient care. Clearly, however, learning about patients in silos of organ systems without considering the broader picture is misleading and close collaboration to optimize outcomes of patients with PSC is essential.

For academic clinicians who manage rare disease like PSC, which itself has no effective treatment option and progresses to important outcomes, it is our responsibility to work towards discoveries that optimize patient outcomes — but this relies on collaboration. Barriers to collaboration amongst engaged and willing academics are immense and, particularly for junior faculty, can be obstructive and discouraging and can easily lead one to simply lose the drive to persist. Creating a network between gastroenterologists within the same specialty, division, and university who simply work at different hospitals managing the same patient can require approval from up to four ethics boards (SickKids, University Health Network, Mount Sinai Hospital, St. Mike’s) and development of individual data sharing agreements — each of which takes months to process. For rare diseases requiring international collaboration, you can just imagine the administrative burden.

Patient privacy is a priority and must be protected — this is not at question. But for observational minimal risk data, collaboration between engaged academics must be fostered, not obstructed. This is ultimately most important for our patients who we want to learn from, with, and for.”

Still using Windows 7? Keep patients’ information safe by upgrading before Windows 7 support ends.

Contributed by Ariane Siegel, General Counsel & Chief Privacy Officer, OntarioMD

In a busy primary care practice, it is critical that your computer hardware and software are up to date with the latest security updates. This task is essential to helping protect patients’ personal health information. Recently, Microsoft reminded users that Windows 7, one of its most-used operating systems, will no longer be supported as of January 14, 2020. This means that security updates for Windows 7 will no longer be issued, which may make an EMR vulnerable to being exploited.  If you’re one of the many clinicians who use Windows 7 in your practice, it’s critical that you act before Windows 7 support ends, to avoid putting your system and patient health information at risk of cyberattack. Under Ontario’s Personal Health Information Protection Act, physicians, as health information custodians (HICs), have a legal obligation to safeguard against unauthorized collection, use and disclosure of personal health information. Ensuring your practice technology is current can help physicians meet this obligation. Now may also be a good time to review your IT plan and ensure all applicable vendor-issued system and security patches are integrated.

If your practice currently uses Windows 7, you may also want to consider an upgrade to Windows 10, the latest Microsoft operating system. OntarioMD has recently published a Bulletin on how to check if your current technology is Windows 10-compatible, why it’s essential that you use the latest technology to protect patient information from cyberattacks and options for support. You may also wish to contact the Ontario Medical Association to learn about the work it’s doing to find practical solutions that support physicians and their practices from cyberthreats.

IT and EMR maintenance needs are best left to IT professionals. Obtaining assistance from an IT professional will help ensure your practice technology stays up-to-date and enables clinicians to focus primarily on patient care. OntarioMD is also here to support you. You can connect with an OntarioMD Practice Advisor for advice any time at support@ontariomd.com. If you’d like to learn more about privacy and security tips and best practices to protect your patients and your practice, take OntarioMD’s complimentary Privacy and Security Training Module. It’s comprehensive, available online and takes less than 60 minutes to complete. Physicians who complete the Module are eligible for 2 Mainpro+ credits.

I thought I knew what digital health was…

Humber River Hospital robot

Contributed by Kathy Tudor, Director, Communications and Marketing, OntarioMD

I have a passion for all things digital. I used to love sticky notes, now I use the notes and calendar tools on my smartphone for things like my shopping list and appointment reminders. I choose from an array of mobile apps to see and talk to my daughter in Ottawa. I track my steps using a mobile app. I don’t need paper maps and printed directions anymore. Google Maps gets me to where I want to go. Any digital tool that eliminates paper or stores PDFs of my documents, count me in. I received a Google Home for Mother’s Day. It’s still in the box, but I can’t wait to set it up and start asking it questions.

My family doctor records my visits and keeps track of everything affecting my health with an EMR. When I was treated for breast cancer, I jumped on the MyUHN Patient Portal to make sure my Princess Margaret Cancer Centre reports were getting to my family doctor through OntarioMD’s Health Report Manager (HRM). Full disclosure – I’ve been working in digital health for 16 years, helping to communicate its benefits. So I thought I knew what living in a digital world meant and thought all my digital tools were really cool – until I visited Humber River Hospital.

I attended the Breakfast with the Chiefs talk at Humber River Hospital on May 7 to listen to CEO Barb Collins talk about Healthcare’s Digital Future. I really wanted to know whether being a fully digital hospital meant providing impersonal patient care and promoting this type of care in the new world of Ontario Health Teams (OHTs). I also really wanted to go on a tour of the hospital to see if all the hype was justified. Before I even arrived at the session, I had to walk through the hospital past a life-like robot (the one pictured above). That was my first clue that this hospital was true to its digital moniker.

Collins outlined how Humber River solved the challenge of delivering enhanced care in a larger facility with more beds and increasing patient visits with the same operating budget, while creating staff engagement and high patient satisfaction. A tall order. More so when you think of how patients are more connected than ever before to knowledge and information.

I could say a lot about what impressed me about Humber River, but I’ll break it down into four buckets:

Digital information

Humber River makes patient information readily available by many people simultaneously contributing to collaboration and sharing of knowledge. Information is actionable, contributing to workflow automation and better decision-making. All systems are IP-based: charting, biomed, diagnostics, robotics, building, etc.

Mobile and connected

The staff at Humber River can access and create relevant information anytime, anywhere! They communicate and collaborate with others instantly and conveniently to deliver care and keep patients safe. The systems used connect with people to drive performance, quality and safety. No fax machines to see here! Instead, what I saw was a Command Centre that reminded me of NASA, only smaller. All systems must be operational 100% of the time and work together to exchange information. At a glance, staff could see which beds were available, where staff were and much more.

Patient empowerment

Patients were just as connected as staff in the hospital. The rooms are amazing. They are all private to prevent the spread of infection. Patients can control the temperature, the tint of the windows and more, with a touch of a screen. Visitors are able to come at any time and always know where their loved one is. Collins said patient satisfaction is at 89%, higher than the national average.

System automation

I wished I could see all areas of the hospital, but there was only time to see a few things. My tour of the hospital took me to the pharmacy. Medications were dispensed by machine, almost completely eliminating the chance of error (it’s only 0.007%). There are bar codes on everything. I was hoping to see more robots in the meds area. Humans were placing and verifying orders. The robots were delivering the meds to decrease wait times.

At the end of the tour, I was humbled. The hospital has thought of everything – even the number of steps the staff take every day, with the hospital and flow of care designed to reduce what they called “sneaker time.” Bringing it all back to my world, I’m glad Humber River uses HRM to move information around part of our health care system. How could they not?

What’s all this wonderful digital connectedness going to mean for OHTs? Humber River could be a team by itself and has become the hub of a large, diverse community. The hospital has plans for community reach and reduced acute utilization that include supporting health and wellness, virtual visits, home monitoring, communication and collaboration.

HRM has become an indispensable tool that the OHTs may adopt. It has an important role to play in communication and collaboration. OntarioMD is planning to make HRM handle bi-directional communication – not only delivering information from the hospital to primary care EMRs, but from EMRs to the hospital. New groups outside the hospital who aren’t digitally savvy or don’t have much access to digital tools now will need to use HRM, and be trained on it, as they find themselves in OHTs. Patients also need and want to see more of their information, whether they’re in an OHT or not. That includes their hospital reports, and HRM will be able to do that too in the future. HRM, the “little engine that could”, is about to get a whole lot cooler in an increasingly digital world.

3 Reasons to Attend OntarioMD’s EMR: Every Step Conference in Ottawa

OntarioMD’s EMR: Every Step Conference returns to Ottawa on June 13, 2019. A lot has changed in the health care sector since our last Ottawa conference in 2017. The provincial government has announced a renewed focus on integrated, patient-centred care, driven by EMRs and digital health tools, and led by Ontario Health Teams. We’ve planned a day of learning and networking designed to help clinicians and other stakeholders make sense of it all.

Register by Friday, May 17 to save 15% with our early bird rate!

With a full day of learning that’s CME-accredited for physicians, access to vendors for EMR training, information on the latest practice technology, and opportunities to meet with OntarioMD Peer Leaders onsite, there are so many reasons to attend the EMR: Every Step Conference. Here are just three.

#1: Harness the Power of EMRs for Mental Health and Addiction Care

Mental health and addiction care are increasingly important focal points in primary care practice, and your EMR can play a vital role in helping you offer responsive, coordinated care to patients with mental health concerns. In a new session, titled Using An EMR to Communicate Between Psychiatry, Primary Care and Mental Health Patients and Improve Care, psychiatrist Dr. Hugues Richard will walk through how the EMR is a clinically valuable tool for communicating with staff, treatment teams and patients. The session will demonstrate how quality of care for patients with mental health and addiction issues is improved by using EMR features such as reminders and the CPP.

#2: Better Understand the Patient Perspective

Julie Drury, Chair of the Ontario Health Minister’s Patient and Family Advisory Council, returns to the EMR: Every Step Conference to deliver the morning keynote address. This year, she’ll lead a panel discussion with voices representing government, hospital, primary care physician and patient perspectives to discuss the challenges and opportunities of increasing patient access to their electronic medical information.

#3: Discover How to Work Even More Efficiently with Your EMR

The increasing number of EMR-integrated digital health tools available hold tremendous promise for improving the patient experience and health outcomes. But they’re only right for your practice if they can help you meet your unique clinical goals. An EMR Progress Assessment (EPA) is a quick and easy way to understand your current EMR use, what else you want to do with health care technology, and which tools can help you do that. The EPA is an OntarioMD-designed online self-assessment tool that asks you a series of questions about how you’re using EMRs and technology in your practice, and helps you understand what else is available. Want to improve appointment scheduling? Document management? How about Chronic Disease Management? Sign up to complete an EPA at the conference when you register for the event and OntarioMD staff can help steer you in the right direction.

We look forward to having you join us on June 13 at the Brookstreet Hotel in Ottawa for OntarioMD’s EMR: Every Step Conference. Visit the conference website to register today!