This session focused on the power innovation as it relates to digital health and patient empowerment from multiple countries.
Mr. Vincent Dumez is a passionate advocate for engaging patients in every aspect of their care. He was instrumental in developing the patient partner program at the University of Montreal as well as co-lead the Centre of Excellence on Partnership with the Patients and Public, which have had tremendous impact. As the moderator for this session, Mr. Dumez introduced the panelists. He spoke about his personal experience in the healthcare system as a hemophiliac patient. He encouraged the audience to be open minded, inclusive and focused on patients with the changes related to the digital healthcare revolution. This powerful message from an Eclinical Medicine article addressed the digital healthcare revolution, “This is a cultural revolution. The sacred power of diagnosis now lies in the literal hands of every man.”
Ms. Huda Idrees is the Founder and CEO of Dot Health (a real-time personal health data platform established in March 2017). Through her experience in the financial and healthcare sectors, she has learned that not all problems in healthcare are related to care delivery, and people with perspectives from different educational and professional backgrounds are valid and useful. In 2019, people are not staying in one place, and their data needs to follow them. Access to data is essential in healthcare. True progress in healthcare cannot be achieved independently; however, knowledge can leveraged from learning from other healthcare systems around the world, other industries and other studies.
The biggest way to accelerate any movement is to move your data with you. In Canada, patients move around the country (and beyond) to receive care, and their health data should follow them. Dot Health has the ability to move your data with you around the world. They are committed to becoming champions for global innovations and leveraging them. Healthcare is often reactive instead of proactive. There is a notion in healthcare that everything most be developed in-house. She believes in seeking people who excel in their professions, regardless of the industry they come from, leveraging their knowledge and working with them.
Dr. Michael Leonard, founder of Safe & Reliable Healthcare, is a cardiac anesthesiologist by training who has practiced in the Greater Denver Area. He advocates for unleashing the power of innovation to improve access to information through digital health. For example, safety has greatly improved in anaesthesia due to technology. He fully supports technology and innovation as long as people are mindful of how they are using it. Electronic medical records were tied to billing processes; the revenue process in the healthcare system is not how doctors think abut patient care. The disconnect between these systems is problematic.
The first patient diagnosed with Ebola had no records available to the attending physician. The patient had previously travelled to western Africa and had a fever; he contaminated dozens of patients in the local community before he was admitted to the hospital. There is a social process in being a patient. In healthcare, there is a wealth of technology available. Technology is an enabler, not a magic answer. Simply stated, technology does not have the power to fix all problems. Technology that is developed without the influence of people actually using it is unlikely to be used or effective.
The lessons learned in other high-risk industries is that technology creates risk until the culture learns to use it appropriately. Cultures are explicit attitudes of groups of people working together; culture is measurable and changeable. If there is a strong collaborative culture, the team can deliver world-class care. Conversely, if there is a group of people that cannot work collaboratively, there will be high rates of avoidable patient harm.
If you are not able perform a process well in an analog fashion, digitizing the process will not be more effective. Healthcare professionals must understand the work in the context of the work imagined versus the work actually being completed. How many hospitals have information systems that do not talk to each other? Unfortunately, there are far too many.
In reference to an article about physician burnout published a couple of years ago, there was a survey with two questions:
1. Do your leaders participate in walk-arounds?
2. Did you get an answer back on the issues you raised?
Many instances occurred when staff members did not get an answer back. People who received answers were able to deliver far better care. What we learned many years ago is that people want and need a voice. This was the beginning of boards and reflective practices. As simple as this process of documentation is, it is profound.
Ms. Andrea Palmer is the Founder and CEO of Awake Labs, a digital health company dedicated to empowering people with intellectual and developmental disabilities to live independent, fulfilling lives. She is committed to keeping people healthy outside of the hospital.
She told a story about an anemic patient who came to a hospital, and a case manager learned before he was discharged that his house was infested with bedbugs. Instead of sending him home, his house was fumigated and he was sent to a short-term residential facility before moving back home. He received adequate support to keep him out of the hospital; this was a successful outcome.
Ms. Palmer wants to be able to duplicate situations like this to ask the right questions. She works with people with intellectual and mental disabilities to manage anxiety to be able to meet their basic needs to do regular activities (i.e. shopping, volunteering, exercising, etc.). Anxiety is often the barrier that prevents people from getting there. Very often people do not or are unable to directly communicate they are getting anxious, and they communicate through their behaviour (incorrectly seen as acting out). Awake Labs uses a smart watch that measures the heart rate, shows the information to a care provider to monitor patient’s behaviour to help the patient and deescalate the situation. In closing, she urged the audience to focus on what they have control over; doing what they can to meet people’s needs, meet people where they are, keep them out of primary care/hospital settings and embrace healthcare in the true sense of the word by keeping people healthy.
Mr. Tim Blake is the Managing Director of Semantic Consulting, a consulting firm focused on leading digital healthcare. This is his first time in Toronto, and he will provide insight into the Australian health system. He works with an international interoperability community. Australia has provinces that run their own health systems, a universal public health system and a national digital health strategy. Australians have a national digital health record (called My Health Record) with approximately 90% of Australians opting into this earlier this year. Patients and caregivers can access it through a portal. Patients do not own their information, but there are a number of controls associated with it. The quality of data varies. In addition to the My Health Record, there has been a digital health innovation boom in Australia, but they only have genuinely succeeded in terms of generating funds. He said that the health system has many digital health accelerators in an environment that is very risk averse and resistant to change. Mr. Blake is focused on patient-reported outcomes because they are the single best predictor of a patient’s future state. He is excited about patient reported outcomes gathered in real time and fire (the emerging standard for interoperability). Interoperability is not about technology, it is about patient safety. Without real time information crossing healthcare boundaries, we cannot put data to work to improve care.
Mr. Dumez commented on how human-focused each of the panelists’ presentations were instead of focusing on the tools. He asked the audience how to avoid waste and to promote efficiency in the digital healthcare revolution. The panelists provided answers; while each panelist had different ideas, they all agreed that solutions should be proactive instead of reactive. Additional questions from the audience included:
What should the government’s role be, provincially and federally, in digital health? Mr. Blake stated that governments can regulate, legislate, store data and create a regulatory environment. Governments risk overstepping boundaries, and their role needs to be carefully negotiated with a strategy that is clear and committed to innovation. Most governments are not good at creating user experiences. Boundaries should be carefully considered and clearly communicated.
With regard to partnership and engagement, what kinds of questions or issues are coming up with the research ethics boards or others involved in the approval process of enabling that type of innovation research to occur in institutions in Canada? Dr. Leonard stated that integrating patient-centred processes in an organization needs to be built. He used the Dana Farber Cancer Association as an example of the need to give patients a voice in the organization.
With regard to interoperability, where does government have a role, and where should they stand back and let health authorities show leadership? Who should own the data? Ms. Idrees said that each layer of government should recognize their role, but need to translate it to the health authorities. Healthcare authorities act as banks or custodians for patient data. Currently, the healthcare authorities do not have standards or guidelines to be good custodians of data. Ms. Palmer said that community based health providers have the ability to grant access to data as well as to revoke access; if interoperability had clear parameters, we would have less patient data access issues. Mr. Blake added that patients should own their own data. Lack of data ownership can result in failures, especially when organizations do not share data. He said that governments need to regulate interoperability to improve overall patient safety. This is not a complicated concept, but it will take time to resolve.
In reference to two comments from Dr. Leonard and Mr. Blake, there is a push in Ontario with very different cultures integrated healthcare teams, how can we get everyone to work together? Dr. Leonard said that patients should own the data, and people need to work and anchor to that common goal. If you can anchor to a common purpose and define goals with rules for every person to follow, this will promote collaborative, integrated health teams. Mr. Blake said that variation in care is a negative concept; there is too much technology and not enough consistency with standards. He said that healthcare leaders and teams should not argue as much to deliver better patient care.
One of the main challenges to translate the value in for-profit sectors in healthcare. There are some ethical issues from physicians to trust digital health technologies, what was your first reaction? Ms. Idrees says that we have become an international example of patient care excellence; a lot of these technologies can deliver improved care for less money. We should focus on bringing in the best tools. Mr. Blake said that there are a lot of issues from physicians saying they do not want to change, fear of privacy, etc. You cannot say “ethics,” and the conversation stops. Ms. Palmer said that it is important to ask patients what their goals are, and use the tools to work toward them.
What would be your digital advice for Canadians? Ms. Idress said that the advice that we can give to the federal government may not translate to the provincial level. Each ministry and the provinces need to have a conversation around standards, and make sure that time is of the essence and move forward with change. Mr. Blake said that poor experiences with digital tools should not start patient portals, pick what you want to change, work backward and put the patients’ needs first.
Mr. Dumez said that this was an excellent debate. He is not sure we are ready to face a dramatic change in terms of systems, make cultural shift and inclusivity a focus, this movement should be patient driven and align with their needs. We need to ensure we are focusing on the right things, and be dedicated to aligning people with the same goals.