The last time you accessed health services, did you feel like an equal partner in the care you received?
Maintaining your health is a lifelong pursuit full of many decisions across numerous stages of life. To effectively manage your health as an expert, you require trusted sources of information and effective dissemination so you can receive the right information at the right time. In healthcare, one approach to ensure you have this knowledge and equally share in decisions related to your health is called person-centered care.
Clinical expertise alone isn’t the cure to achieve healthy people living joy-filled lives. To succeed, we must ensure all people participate as equal partners in care. In practice, we call this Person-Centered Care (PCC). The Health Innovation Network of South London defines PCC as, “a way of thinking and doing things that sees the people using health and social services as equal partners in planning, developing and monitoring care to make sure it meets their needs.” Creating effective health experiences requires you as a patient to be consulted and collaborate in the care you receive.
Digital health is one of the most rapidly expanding areas of health. Yet in that growth, we may be neglecting the most important piece of the healthcare puzzle.
“In the early days of digital health, I think we were much more focused on the patient than we are now.” — Chris Hogg
Person-centered care is a framework that will allow us to refocus, but in a digital environment, three elements must be considered:
A leading problem with health information is fragmentation. From the hospital to your doctor’s office and, most recently, across databases of various digital health services — your data is scattered across all the resources you use to stay well. Lack of data consistency is a problem because it means no one, including you, has a complete picture of your health.
Work is being done to have these many systems communicate through a process of interoperability, but that may be insufficient. Person-centered health requires person-centered data. With what’s now possible through technology, it’s not enough for information to flow around you, it should be accessible by you. You’re the expert on you, through wearables and self-management tools you generate valuable information that can contribute to your overall care experience. As a steward over your health data, you could securely coordinate information between your care team, including a doctor, counsellor, trusted friends and family, and even researchers. Along with system-level interoperability among various digital health vendors, digital health needs to be compatible with you.
The second challenge is a matter of data clarity. Data that exists today may not be the data we need. Current health records contain acronyms, jargon, and lab results. Although this information is effective at helping clinical professionals help you, it may not be conducive to your collaborative participation. It’s not a matter of generating a carbon copy of what exists today. As a valuable member of your care team, the data you receive needs to be understandable and actionable. In a person-centered system, information is clear and supportive, with access to additional resources to help you in making informed health decisions.
Whether a person is recovering from a broken leg, battling cancer, or overcoming depression, mental health is an intrinsic part of our overall wellbeing. Mental health is also an area of extreme fragmentation. Still a very analog area of health, the transmission of information between counsellors and physicians, for example, can be very time consuming and still reliant on the old-fashioned use of a fax machine.
At Speakbox, this issue is of particular importance to us. Living a mentally healthy life depends significantly on our access to information. Unlike general medicine that may require complex treatments for a person to recover, balanced mental health comes from having deep emotional intelligence and knowledge of cognitive skills to aid us when life gets hard. Unlike complex medical treatments requiring clinical specialists to administer, mental health professionals often act as knowledge brokers, guides to help us fill in the gaps on how to live a mentally healthy life.
For mental health, healing doesn’t come directly from discussion with a counsellor, it comes from the application of what we learned during sessions into our daily life. Amid battling depression or anxiety, this process is not as straightforward; it takes work. Digital health can extend the skill of mental health professionals by supporting you outside your appointments. Managing your complete health record, including mind, body, and social health data, you can now easily collaborate between your family doctor, counsellor, and trusted friends and family. Fully informed, your health data is understandable, supported by supplementary resources to aid in decisions, and actionable. Digital health doesn’t replace health professionals; It magnifies their value.
Access to health isn’t a luxury. Digital solutions can’t be limited to those with the latest phone and money for a premium subscription. As much as we focus on innovative products, so too should we seek sustainable business models that don’t result in the public paying to access their data. Developing digitally indeed comes with its own set of barriers, such as the cost of hardware and reliable internet access. These aren’t unsolvable if we work together. Whether you’re a care provider, product developer, or member of the public, we all have a role to play in achieving person-centered digital health. What better time than now,
Public: Become informed about digital health and, when able, advocate for a system that puts you at the center of your care. If you’re in Canada, stay informed by joining the Access2022 movement.
Developers: Embrace person-centered care by seeking ways to improve access to your product and the data it creates.
Digital health may be complex. Including people at the center of their care is not. Person-centered data isn’t a future technology; It’s possible today. Everyone has a role to play in ensuring accessible data becomes a standard practice within digital health. All people deserve accessible health care. Collaborating as innovators, this is our chance to break down national walls and come together on a truly global challenge. You can help create these solutions, let’s work together and create a future with unobstructed health.
Aidan Scott is Co-Founder of Speakbox. After experiencing several challenges attempting to access care after being diagnosed with Post-Traumatic Stress Disorder (PTSD) caused by childhood trauma. Aidan's experience, reinforced by his experiences working in the public health sector has inspired him to seek out new ways to reduce barriers and improve access to mental health care using technology.