Posted on June 6, 2017 by @healthadvoc_ca
Last fall, I attended the Infoway Partnership Conference to bring the patient voice to the conference floor.
I came away from the empowering Infoway Partnership Conference more dismayed than ever by our health care system's regional fragmentation, more frustrated by how isolated its silos of disconnected expertise, resources and experience truly are. I also came away inspired by the dedication and optimistic energy generated by the participants.
@healthadvoc_ca is a patient advocate who attended the 2016 Infoway Partnership conference. If you are a patient or caregiver interested in bringing the patient voice to this year’s Partnership Conference, scholarships are available! Learn more.
I strongly believe the system needs a people-centred redesign from the grassroots up, one ensuring system users and clinicians are equal partners and where education, technology and data-sharing drive financial and policy changes. I came away believing we can collaborate and combine our assets to rebuild health care into a patient-focused system that considers individual genomic data as well as social determinants of health in customized, preventative care, enabling patients to meet individual goals and participate more fully in their own lives. All while costing society less.
Two years ago, my journey in healthcare took a turn from caregiver to patient. Frustrated by the many challenges of navigating the system, I started using apps and wearables to collect data, set goals and track my progress to share with my health care team. This data was not accepted as reliable or valid by my team, but it did allow me to track changes in my recovery and effect meaningful change.
As I could not afford to wait the 17 years’ current research suggests it takes for new practices to be adopted by mainstream health care, I took it upon myself to share my research with my team. I questioned why they still cannot share access to my Ontario-based digital health files. I spent hours on hold and performing redundant tasks. I continued my research and became involved with Infoway. I was pleasantly surprised to find they were advocating for patient-centred, digital care and that I was able to add my voice to those of other patients, health, tech and business sector professionals advocating for change.
Words have powerful associations, but whether we take back the word 'patient' or choose a new term, we must not ignore the power in the word and the role. Patients are not just numbers to be tracked for billing or research purposes, or a bargaining chip between professionals in a territorial or payment dispute. Patients must be included in more than a single conference, or invitation for comment on policy planning. We need to be involved in every phase of the redesign process of healthcare, ensuring that it considers the individual needs of each person as a whole person: medical needs, environmental needs, support and financial structures—all aspects of a patient's life.
Knowledge is power. Giving people access to view and add to their personal health care data through open API's, providing education and resources to help society and individuals embrace and understand this information, cultivating an informed public that is comfortable connecting with their clinicians in a timely manner - using online tools and allowing community clinicians to share information with patients and other health care partners — will maximize this power. What's meaningful to the patient should be considered in designing their health care plan and it must permit them to continue to participate meaningfully in their life. Through advancing each of these policies we can realize better health outcomes as well as cost reductions.
Our current system is neither efficient nor sustainable. Change needs to involve collaboration between leaders from all levels (patients, policy, finance, IT, clinical, etc.) using shared language to agree on common goals to innovate a new, transparent model of care.
Technology can also provide anonymous support for issues some may be uncomfortable addressing otherwise. It can connect remote areas and allow distant families members to be included in care and support. It can help people live independently longer, and decrease hospital stays. Digital health care can be a tool to improve workflow, reduce cost and shift the balance from administration to patient care, thereby bringing greater empathy back into healthcare.
I'll end this post with a call to action: our current system is represented nationwide by advocacy organizations for professionals, technicians and business partners...but no such group representing patients. There are groups that speak for patients, but no organization made up of a meaningful number of patients themselves. Patients simply don’t have a seat at the table in the same way. To enable patients as partners in health care we need that unified voice to ensure that clients of the health care system remain its focus. I urge Infoway — and everyone reading these words — to never lose this focus.
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@healthadvoc_ca is a patient advisor at healthadvocacy.ca. After seeing first hand the need to bridge the gap between industry clients and professionals, @healthadvoc_ca set a goal to help improve health care for all stakeholders.