This is the second part of our OntarioMD virtual panel discussion, in which we ask the patient advocates and clinicians who spoke at our Ottawa EMR: Every Step Conference keynote panel in June for their insights on the question “What will a successful digital health transition look like to you?” If you missed Part 1 of our virtual panel, you can read it here.

Also, don’t miss your chance to join us at our Toronto EMR: Every Step Conference on September 26 for more great education and networking around how to build an effective patient-centred health care system driven by digital health technology.

Claire Dawe-McCord, Former Member, Minister’s Patient and Family Advisory Council

We have reached a tipping point in Ontario where if the digital health transition is not properly executed soon, we will be left stagnant in an ever-developing electronic world. As a Health Sciences student and a patient with many complex, life-threatening disorders, I believe digital health is crucial not only to the functioning of our health system, but also to the safety of patients. At age nine, I began experiencing what seemed to be vague, unconnected symptoms that landed me in the emergency department and specialist offices countless times. Every test came back inconclusive, until I became extremely ill in grade 11 and spent ten days in a medically induced coma and months as a hospital in-patient. During that time, I luckily received the diagnoses I had long awaited, Ehlers-Danlos Syndrome and a sodium channel malformation resulting in a rare neuromuscular disorder which often induces massive potassium abnormalities.

Rare diseases are difficult for patients and caregivers to navigate; In the years following my diagnoses I have had to repeatedly explain my disorders to health care providers, often in critical situations. This is where digital health can play an important role. For many people, digital health is about efficiency and cost cutting, but for patients like me, having quick digital access to my records can mean the difference between life and death.

For me, a successful digital health transition would involve a single sign-in system where all of my records dating back to when they were first digitized from all of my providers – including my primary care team both at home and at university – can be accessed in real time both by me and by any providers who may require the information. Ideally, this system would also incorporate ways for patients to make the “small things” easier: that means, being able to email my care team, book appointments online, and see where I stand on wait lists for specialist referrals.

Dr. Daniel Pepe, Family Physician, London Lambeth Family Medicine Clinic

Navigating a successful digital health transition is not an easy feat. The current digital landscape is a partially developed polaroid at best. I first was exposed to “digital healthcare” during my first night on call as a surgical resident. As a medical student, I had learned to be efficient by opening each chart to the correct page, filling out as much information as I could for my senior so that with a swipe of a pen we could move onto the next room. However, overnight, our hospital went “online” with electronic ordering and our workflow was immediately thrown into chaos.

As a family physician, I have learned that digital health transitions provide us with an opportunity to not just digitize our processes, but to, more importantly, evaluate and improve our underlying culture. Thus, I believe a successful digital health transition must be able to transform the underlying culture. Digital health solutions today provide us with a rudimentary quilt of various partially integrated solutions that allow us to do some, but not all, of the functionality we require to be effective digital healthcare providers. I would contend that the most effective digital solutions are those that enhance, rather that detract, from the patient-doctor relationship.

Most importantly, we must look to digital solutions to allow us to solve problems dynamically. A few days ago, I was reflecting on how the problems I see are sometimes due to medical illnesses, sometimes due to social determinants of health, and other times due to access to, or awareness of, community services. Imagine an e-referral network where we could simultaneously search for an endocrinologist, Meals on Wheels or assisted living. That to me is a holistic solution to upstream care that doesn’t involve huge investment, but just requires making the current solutions more readily available to providers.

One thing is clear to me – this transition will not happen successfully without the intentional inclusion and empowerment of patients, caregivers and families. Google would never design a new product without considering the user experience, and we, as healthcare providers and leaders, need to focus on the patient journey from diagnosis until end of life. We don’t need many tools, but they need to be employed in a thoughtful way. Technology has the ability to help us deliver the best care, at the right time, by the right provider, through the right means.

If you attended OntarioMD’s Ottawa EMR: Every Step Conference this past June, you know about the amazing discussion and insights shared by our keynote panel on the challenges and opportunities of patient access to electronic medical information. We’ve invited our Ottawa panelists to continue the conversation over the coming weeks here on OntarioMD’s blog, to discuss the question “What will a successful digital health transition look like to you?”

Join us at our Toronto EMR: Every Step Conference on September 26  for more great education and networking around how to build an effective patient-centred health care system driven by digital health technology.

Julie Drury, Former Chair, Ontario Minister’s Patient and Family Advisory Council

In our current health care landscape, patients are their own care coordinators, information gatherers and information disseminators. That is a reality that is unlikely to change as patients become increasingly supported to be partners in their care, are encouraged toward self-care and self-management, and are engaged in shared decision making.

These are all good things.

However, we are no longer a ‘paper-based’ society, and there are high levels of inefficiency, poor communication and issues of patient safety in the absence of digital solutions. Patients must submit applications for requests to access their health information (and pay for it). They create binders of their own personal health information, and they are forced to use technology such as CD images to access and share information.

We are increasingly a digital society. We bank, pay bills, make appointments (other than medical), update our health cards, licenses and pet registration, all online. Digital health is slowly evolving through the application of EMRs in clinicians’ offices, EHRs in hospitals, and the establishment of patient portals. We are discussing electronic referrals and electronic consultations. Virtual care via secure email and video-medical technology is slowly emerging. However, this transition to electronic information is being hampered by outdated privacy legislation that limits information exchange, clinicians who do not want patients to have unfettered access to their information, and patient portals/EHRs that are not interoperable.

In some instances, solutions to these issues are on the horizon. But from the patient perspective, these solutions seem to be focused around organizational and provider needs, while the needs and expectations of patients is secondary.

For a digital health care system transition to be effective for all system participants, patients must be part of the conversation.

Selina Brudnicki, Program Lead, Digital Patient Experience, University Health Network

As Ontario Health Teams move toward a connected health care system centred on patients and their families and caregivers, a successful digital health transition must enable seamless flow of information for patients, authorized care providers and family/caregivers that make up their circle of care. Flow of information includes electronic access to data and analytics; virtual, real-time or asynchronous communication; and the ability to facilitate other types of interactions. This supports safe transitions and activates patients to gain the skills and confidence they need to participate in their own care. Patient activation leads to better health outcomes and care experiences.

One of the basic digital needs of patients is online access to their complete health record information, including test results, reports and clinic/doctor notes, so they can communicate effectively with their care team to make safe, timely and informed decisions. Transparency helps patients feel more engaged, and engaged patients are “more likely to adhere to treatment plans and medications, follow through on screening and prevention protocols, detect and prevent errors, and adopt more effective management strategies for chronic illnesses.” 

Unfortunately, barriers to patient access exist such as health professionals’ fear of increased workload, telephone calls and duration of appointments. Despite these concerns, that fear has been unfounded. There is a perception that patients and society may expect more of physicians and care teams in the future. EMR vendors could help reduce fears and potential burnout caused by excessive time, effort and frustration associated with electronic documentation. Observing and understanding the needs and challenges of providers, patients and family/caregivers could improve their EMR products and result in efficiencies and better experiences.

Seamless flow of information requires health data to flow privately and securely between information systems or applications when authorized to do so. Interoperability standards already exist and we must advocate that these services be readily available for the purpose of health information exchange, integration and retrieval of data. With recent advances in technology and innovation, it will be important for patients to gain visibility and transparency into all their health data, wherever it lives, and be able to control, authorize and monitor secondary use by third-party companies or organizations.

Ontario Health Teams (OHTs) hold the promise of organizing and delivering care that is more connected to patients in their local communities. Health systems and health data have lived in fragmented silos for far too long, and we must be careful that we do not create new types of silos. We must find better ways to collaborate, share knowledge and expertise across OHTs and disciplines, and think beyond ‘health care’ toward larger goals of ‘health.’ Bringing together patients, family/caregivers, care providers (including solo primary and community care practitioners), privacy/policymakers, government, technical and innovator subject matter experts would help leverage and scale investments and find sustainable solutions toward a connected health system.