We need patients and families to share their perspectives, share their experiences and provide insight into what change and improvement might look like. Patients and families are the teachers we need, the experience we seek and the champions of effective change. Our patients are what will make the medication work by giving the perspective of compliance, the surgery safe, by giving the perspective of what patients need to know and the agents of change by sharing their experiences.
From our local hospitals, to national committees to international opportunities, such as working with ISQUA, myself and others are committed to change on the healthcare front. We advocate for the patient voice, experience and perspective to shape how health care is delivered. Not just the way care is delivered at the bedside, but policy development and administration at every level of the healthcare system.
How can we do this? How do we incorporate the patient voice?
We do this by leading by example. We do this by providing patients/families the opportunities to teach and listen, inform, and advise. We do this by partnering with patients, and working together until the patient voice is embedded into every healthcare policy and practice, and we do this until we cannot remember a time when we didn’t; and then we keep doing it.
Patient’s are the actual users of our health care systems and their perspective is essential on how that system is being delivered, what is working, and more importantly, what is not working.
I recognize that not everyone will be comfortable with having representation from patients or families. Objections may range from arguing that many patients would not be well informed enough to be able to contribute meaningfully, to fears that some patients may have a personal bias and be unwilling or unable to represent interests other than their own. In reality, these exact same arguments could be made for any participant around a boardroom table, be they clinicians or clerks, bureaucrats or barristers; indeed, anywhere that discussions are held and decisions are made.
Change and challenging the way things have always been done can be uncomfortable and progress can be slow. In some cases, including the patient voice may require a genuine culture shift. The terrain may be unfamiliar at times and much effort may be required to clear a path. This path will be difficult to walk at times. However, for patients, for families, and for the medical establishment, we need to learn to walk it together, with grace, negotiation, mutual respect and collaboration. And side by side.
Hear the patient voice.
Denice is employed as a Patient Representative for the Capital District Health Authority in Nova Scotia. Denice is past chair of the family faculty for the IWK Women’s and Children’s Hospital in Halifax and a member of Patients for Patient Safety Canada (PFPSC), a program of the Canadian Patient Safety Institute. As part of PFPSC, Denice was on the working group which developed guidelines for the disclosure of adverse events, acted as a volunteer consultant to the Queen’s Joanna Briggs Collaboration (QJBC) for Patient Safety Practices in Nursing and Health Care and served a on a pan Canadian committee for patient safety in mental health.
Denice is also a World Health Organization (WHO) patient safety champion, the Canadian representative to the Pan American Health Organization (PAHO), as well as a member of the American Society for Quality (ASQ). In addition to promoting organ and tissue donation with Life: Pass It On, and the David Foster Foundation, Denice also works with bereaved families.
Most recently, Denice accepted a one year appointment as an advisor to the board of ISQA, representing the patient experience.
Denice has presented and published on topics as diverse as organ donation to quality systems and healthcare issues to humour.