Healthcare systems are changing rapidly. Much of the change is being driven by
consumers demanding a larger role in their care. Some of the change is being hoisted upon
consumers as a way to gain efficiencies in a bloated model of care that is resistant
to change. From the Pushmepullyou
efforts of healthcare reform, will we emerge with better care and a model of
shared responsibility between consumers and healthcare professionals?
Many change makers out there (and there are a lot) are blazing
new trails, taking on large bureaucracies and systems that are resistant to
change, pulling all of us towards a more participatory healthcare system.
In his recent TED Talk, Lucien Engelen promotes a fresh new
approach to health research. Research
in Healthcare is Without Patients, explores the concept of crowd-sourcing (co-creation)
advice and financing for research so patients are more engaged in the process. As an advocate for personally controlled
health information, I applaud the concept of crowd-sourcing research. Bringing the research community together with
patients to solve issues makes perfect sense and the video made me wonder where
the patients are in my country’s research processes.
In Canada the federal government is promoting the Strategy for Patient Oriented
Research (SPOR) funded through the Canadian Institute for Health Research
(CIHR). According to CIHR, the goal of
SPOR (emphasis is mine) “is to better
ensure the translation of innovative diagnostic and therapeutic approaches to the point-of-care, as well as to help
the provinces and territories meet the challenge of delivering high quality, cost-effective health care. It involves
ensuring that the right patient receives the
right clinical intervention at the right time, ultimately leading to better
health outcomes”. The
$240 million in grants recently approved through SPOR consider health
systems, healthcare professionals and governments but the patient is relegated
to the receiving end of services, not as a contributor to the solutions. Shouldn’t patient engagement be a fundamental
component of “patient-centredness”?
On the other end of the patient-centred spectrum we have Salvatore
Iaconesi (find him on Twitter @xdxd_vs_xdxd ) who crowd sourced his cancer
treatment and blogs about it at La
Cura. Salvatore lives in Rome and at the age of 39 is
battling brain cancer. Unable to access his MRI’s, he cracked the codes to his
clinical records and, on September 10th posted them online inviting the world to
respond to his diagnosis in whatever way they want. Salvatore also spoke
at TEDx in Rome The
Cure where he explained how he took the hundreds of thousands of
responses to build his personal strategy to combat his brain cancer.
With the expanding utilization of digital devices and access
to personal health records it won’t be long before healthcare consumers are
demanding to partner with healthcare professionals in their care taking on
roles from advisers to self-managers of treatment plans. Lucien, Salvatore and many others are
contributing to this exciting new future for healthcare, they are the pioneers
who will be recognized and celebrated for years to come.
It’s your health. It’s
your health information. Manage it
well.
