Has there been a patient revolution? More importantly, who won and was there a transfer of
power? My recent battles for patient care seem to consist mostly of “hand-to-hand” combat
and “lobbing grenades” from the trenches, and it is possible that I missed either an “armistice” or victory for patient rights.

On a regular basis, I am besieged by requests from patients to gain access to diagnosis,
specialists, treatment, test results, psychosocial care, or caregiver support. In many of these cases, patients feel they have no voice to make the request on their own. On behalf of patient groups or alliances, we are advocating on many fronts for patient partnership, for example, a policy to support rare and neglected disorders, comprehensive programs to engage and support patients in chronic condition self-management, aggressive health promotion and prevention initiatives that support patients to eat healthily and to be physically active. We know that these programs work best when patients partner in design, execution, and feedback, but how routinely are patients engaged?

So, when I was asked to write an opinion on the “patient revolution”, it seemed a good
opportunity to step back and take stock of the status of the patient movement in Canada and worldwide.

Is there evidence of a patient revolution? In the UK, the Department of Health has positioned the “patient revolution” as the cornerstone for “liberating the National Health Services.” They have even co-opted the slogan, “no decision about me without me”, a somewhat less prosaic but more pragmatic version of the original patient mantra, “nothing about us without us.” The World Health Organization and the UN High Level Summit on Health have called for patient empowerment and self-management as essential to dealing effectively and cost-effectively with noncommunicable (chronic) diseases.

In Canada, patient engagement and patient-centred care are currently popular concepts,
embedded in legislation (Alberta Health & Wellness Legislative Framework for Health, Canadian Agency for Drugs and Technologies in Health), health agencies (BC Patients as Partners, Quebec Institut national d’excellence en santé et en services sociaux), charters (Canadian Medical Association), vision (Health Council of Canada), and engagement initiatives (Health Canada Office of Consumer and Public Involvement). Recognition is important but in many of these cases, patients do not have any feeling of “ownership” or “partnership”, although they may have been consulted in the planning. To be fair, many of these are just getting starting and the BC Patients as Partners program stands out as an example where concerted efforts are being made to engage patients on many levels.

What are the indicators of a patient revolution? Some have proposed “participatory medicine” and the informed “e-Patient” as hallmarks of a patient revolution, both terms referring to patients who are informed and empowered to collaborate on making decisions and managing their own care, individually or as part of a patient community As CEO of the Institute for Optimizing Health Outcomes, I would certainly endorse the activated and engaged patient as a desired outcome. Our institute, along with organizations such as the Arthritis Society, Canadian Cancer Society, and the Kidney Foundation of Canada have supported patients to deliver the Chronic Disease Self-Management Program. In addition, the IOHO has trained healthcare professionals in Health Coaching to engage and support patient self-management. But these efforts are far from standard care, not well known or supported by healthcare professionals and not integrated into health service delivery in primary care, diabetes and other chronic disease clinics, and community-based care.

As importantly, from my perspective as Chair of the International Alliance of Patients
Organizations, Chair of the Consumer Advocare Network, and President of the Canadian
Organization for Rare Disorders, evidence of a patient revolution is the fact that patients and patient organizations are “doing it themselves.” No longer waiting to be invited to the table, we are developing and implementing patient-centred programs, hosting multi-stakeholder conferences, forums, and roundtables and inviting healthcare professionals, researchers, and decision makers to partner with US. Patient groups are setting up information and support networks as well as patient registries, collecting data and evidence (including patient stories) on impact and value of patient-centred care and proposing policies and legislation that support patient self-care, patient choice and patient rights to access information and care. Patient networks have progressed from funding advocacy training to training in drug review processes (regulatory review, health technology assessment, and patient submissions) and hosting policy sessions on topics such as genetic non-discrimination, subsequent entry biologics, and patient safety.

In the early days of strident patient advocacy (spearheaded by groups representing HIV/AIDS, breast cancer, and those infected through “tainted blood”), we demonstrated in the streets to call attention to the cause. But, it was clear that our real goal was to “get through the door” and a “seat at the table” where decisions were being made. At an individual level, this means patients get all of the information and options to participate in an informed decision, that takes into consideration their personal preferences and values. So, if patient revolution means that we have passed the “tipping point” where patients are routinely invited and treated as important stakeholders in consultations and at decision-making tables, then, yes, there has been a patient revolution. Moreover, it is clear that patients have no intention of retreating. We are becoming more sophisticated in making sure that patients are informed and confident in their participation, so our opinions are heard and acted upon. And we are indeed delivering value as partners in a patient-centred healthcare system.