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October 2014
Open Meeting: The experiences of family caregivers
Oct 10, 2014 10:57 AM

Open Meeting: On October 7th we hosted a meeting to share our experiences as family caregivers. A few themes emerged:

1. Family caregivers are invaluable resources as they hold the key to a patient's medical history

2. When entering hospital, bring a loved one or family caregiver; their presence and insight can help you through your experience

3. As family caregivers become more involved in caring for their loved ones, they not only require more support from the healthcare system, they want to be respected as a part of the patient's health team as well

The shared experiences of those who attended this meeting reinforced the endless compassion and determination that is characteristic of family caregivers. It was also revealed becoming a family caregiver is akin to assuming a full-time job. (And usually in addition to an existing job.) The role of caregiver, particularly for a patient with multiple chronic conditions, typically includes medication management, appointment management, wound or personal care, diapering, advocacy, emotional and psychological support... the list goes on.

It's most often spouses, partners or close family members who take on this role, and we consistently hear how rewarding it is to care for their loved one, and how grateful they are to be with them. But family caregivers are unpaid, often overworked, and many of them report negative effects on their mental and physical health. So, how can we help the helpers? What kind of changes would improve the experiences of family caregivers?

The points made during our conversation can be found below:

  • Family caregivers are the gatekeepers of a patient's medical history
  • Family caregivers have deep knowledge of a patient's condition - listen to them
  • It would be helpful if family caregivers were given a summary of the treatment and or procedures done upon leaving the hospital
  • Make medical records available electronically to the patient and family caregiver
  • A principle in every hospital should be to listen and respect the voices of family caregivers

As we continue this important dialogue into the new year we invite you to join the conversation. Make your experience count.

ALL, Our Open Meetings  
September 2014

Small Changes with Impact: The Third Chair in Triage™
Sep 10, 2014 1:17 PM

Small changes can improve the experiences that patients and families have with healthcare. We have been talking about things like hospital parking and food as areas that are relatively non-controversial but have room for clear and concrete changes that would significantly impact our experiences as patients or family members. We’ve developed these ideas to act as Key Performance Targets (KPTs) that can be used by healthcare organizations and bodies to help improve their care.

These KPTs were identified by listening to patient experiences for many years and discussing them with a panel of patients, family members, providers and researchers to determine how these experiences could be improved. We’re now excited to announce Patients Canada’s Small Changes with Impact initiative – a set of Key Performance Targets for healthcare, informed by patient and family member experiences with the system.

The first of these ideas sets the tone for what we are doing; it is a small change that has not so far occurred to service providers, has only been implemented in hospitals with a well-developed patient voice, and can be seen as a challenge for change in hospitals that have not yet implemented it.

Over the last few years, we have heard hundreds of stories from patients and families who have visited emergency rooms. From them, we learned that most emergency rooms have two seats in the triage office – one for the patient and one for the triage nurse. Over time, it became obvious that a third chair for a family member would be a tremendous help not only for the patient and the accompanying person (often a family member), but also for the triage nurse who could gain that extra insight when making the decision about what to do next.

The Third Chair in Triage™ is our first Key Performance Target. We have been told by the CEO of the Kingston General Hospital, Leslee Thompson, that the third chair has already been installed in their hospital emergency room. Obviously, their Patient and Family Experience Advisors came to the same conclusion that we did.

Our challenge is not only to hospitals, but also to researchers in emergency medicine, regulatory bodies, accreditation groups and others to respond to this minimal intervention. The hospitals can add the chair and researchers can evaluate the impact. After that, regulatory agencies might adopt it as a requirement for accrediting emergency facilities. We believe that this would be an important step forward in making healthcare services more patient-friendly. What do you think?

Next week we will present more key performance targets.

ALL, Patient-centred measures  
July 2014

'Healthy privilege' - when you can't imagine being sick
Jul 24, 2014 10:24 AM

As the number of ehealth applications rises, there appears to be a growing divide between who developers think are using their products ('healthy, fit, not-sick!'), and actual patients. Although their designs help to manage patients' increasingly complex health needs, new applications are used by the 'worried well' - people who can easily learn the technology, who are free from pain and who can consistently track symptoms - versus actual sick people.

This is referred to as 'healthy privilege.' Illness is often invisible and affects people in unexpected ways, so it's often difficult to really 'get' what being sick is all about. This article offers insight into the value that the experiences of patients and caregivers can provide to the future of ehealth solutions.

Read the article

ALL, Digital health and patients  
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