Patient Experience Journal (PXJ, The Beryl Institute)
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Twelve principles to support caregiver engagement in health care systems and health research
Get PDFFamily and friend caregivers (i.e., unpaid carers) play a critical role in meeting the needs of people across various ages and illness circumstances. Caregiver experiences and expertise, which are currently overlooked, should be considered in practice (such as designing and evaluating services) and when designing and conducting research. In order to improve the quality of health care we need to understand how best to meaningfully engage caregivers in research, policy and program development to fill this important gap. Our study aimed to determine principles to support caregiver engagement in practice and research. A pan Canadian meeting brought together 48 stakeholders from research, policy and practice and lived experience (caregivers) to share perspectives on caregiver engagement and co-design. Several presentations from each stakeholder group were shared, followed by discussion and report back sessions. Extensive notes were taken and members of the research team synthesized the findings into categories and presented them back to participants for verification. 12 core principles to support caregiver engagement in practice and research were identified and validated by attendees: use policy levers and incentives, make blunt structural changes, face fears, recognize caregivers and increase opportunities to engage, define what quality means, be mindful of whose experience is being represented, address language and power, engage early, clarify roles and expectations, listen and act on what you hear, measure, and create a community of learning. These principles provide a foundation to guide curriculum development, core competency training, future research and quality improvement activities in health care settings
Volunteer contributions in the emergency department: A scoping review
Get PDFThe objective of this scoping review was to identify published and unpublished reports that described volunteer programs in the emergency department (ED) and determine how these programs impacted patient experiences or outcomes. Electronic searches of Medline, EMBASE, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews and CINAHL were conducted and reference lists were hand-searched. A grey literature search was also conducted. Two reviewers independently screened titles and abstracts, reviewed full text articles, and extracted data. The search strategy yielded 4,589 potentially relevant citations; 87 reports were included in the review. Volunteer activities were categorized as non-clinical tasks (e.g., provision of meals/snacks, comfort items and mobility assistance), navigation, emotional support/communication, and administrative duties. 52 (59.8%) programs had general volunteers in the ED and 35 (40.2%) had volunteers targeting a specific patient population, including pediatrics, geriatrics, patients with mental health and addiction issues and other vulnerable populations. 18 (20.6%) programs included an evaluative component describing how ED volunteers affected patient experiences and outcomes. Patient satisfaction, follow-up and referral rates, ED hospital costs and length of stay, subsequent ED visits, medical complications, and malnutrition in the hospital were all reported to be positively affected by volunteers in the ED. These findings demonstrate the important role volunteers play in enhancing patient and caregiver experience in the ED. Future volunteer engagement programs should be formally described and evaluated to share their success and experience with others interested in implementing similar programs in the ED.
Experience Framework
This article is associated with the Infrastructure & Governance lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this lens
Technology, innovation and transforming healthcare faster, smarter and together: A conversation with Dr. Rasu Shrestha
Get PDFAs part of our special issue on Innovation and Technology we had the pleasure of speaking with a visionary leader, Physician and healthcare executive, Dr. Rasu Shrestha, executive vice president and chief strategy officer at Atrium Health. In the conversation with Dr. Shrestha we were able to cover the foundational ideas of innovation and technology. We also explored its opportunities and potential pitfalls. Ultimately, we looked at the topic through the lenses of the human experience we provide in healthcare and how through a clear focus on experience and the effective integration of innovation and technology in those efforts, we can achieve the best in outcomes for all we serve in healthcare.
Experience Framework
This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this len
Representing the patient experience of heart failure through empathy, journey and stakeholder mapping
Get PDFHeart failure is a long-term condition requiring those affected to manage numerous self-care related activities. People with heart failure report multiple challenges accommodating self-care activities in their every-day life. The aim of this study is to (1) understand the experience of people with heart failure and their caregivers in the local patient population, and (2) visually represent these experiences to inform the design of a mobile health intervention supporting self-care. Seven patients and four family caregivers were interviewed using an empathic approach. Data was collected using rapid design methods including an empathy map to uncover patient and caregiver perspectives and a journey map to document daily self-care activities. Content analysis resulted in a needs and insights summary, a journey map and stakeholder map. The needs and insights are summarised in five themes; controlling, trusting, concerned, symptom-laden and accepting. Negative experiences - restlessness, breathlessness and urination – occurred overnight as visualised in the journey map. Overwhelmingly the spouse and general practitioner were the personal and professional stakeholders involved in self-care activities. Understanding the experience of people with heart failure was the first step in the creation of a patient-centred mobile health intervention. Rapid design methods such as the three presented in this paper can give voice to the patient experience, their frustrations, challenges and existing support structures in a clear, visual format to aid empathic design
Are you my doctor? Utilizing personalized provider cards to improve patient/doctor connections
Get PDFIn the setting of large, multidisciplinary medical care teams, it can be difficult for patients and families to identify their primary providers in the inpatient hospital setting. A review of our institutional patient satisfaction scores reflected a low rating with respect to families identifying their provider. We sought to improve patient and family connections with front line providers using personalized provider cards. We developed trading cards with pictures and biographies of the doctors on each card as well as an explanation of provider roles. The cards were piloted on a single inpatient unit without trainees. We had great provider engagement with use of the cards. We saw short term and longer-term improvement in specific patient satisfaction metrics after implementation. This pilot supports expansion of these cards into other areas of the hospital to improve patient satisfaction.
Experience Framework
This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this lens
A case study of the patient wait experience in an emergency department with therapy dogs
Get PDFThe quality of patient healthcare is a growing concern in Canada’s hospital emergency departments (ED) due to increasing wait times and associated adverse outcomes. A developing body of literature indicates that therapy dogs can positively impact the patient experience. In 2016, members of our team partnered with the Royal University Hospital (RUH) in Saskatchewan to become the first ED in Canada to integrate a visiting therapy dog to positively impact the patient wait experience. The aim of this preliminary case study was to examine if and how this unique initiative impacted patients’ feelings during their ED wait. A brief questionnaire was completed with one-hundred and twenty-four patients pre and post-therapy dog visit and a research observer documented the encounters. Quantitative and qualitative analysis of the data revealed that visiting with a therapy dog in the ED appeared to improve patients’ feelings. Specifically, patients’ perceived comfort levels increased and their distress levels decreased, and the encounters were considered by patients to be a welcome distraction from the stressful ED environment. Our team, comprised of clinicians, researchers, therapy dog handlers and patient advocates documented the advantages and challenges of implementing the initiative. The outcomes support further study of patients’ wait time experiences in the ED and the utility of a visiting therapy dog
The importance of physician to physician coaching, medical director and staff engagement and doing “one thing different”
Get PDFWith the Center for Medicare and Medicaid Services incorporating patient experience into the Value Based Purchasing metrics, there is increasing hospital focus on improving this important aspect of patient care. The Value Based Purchasing program bases 25% of its value on the patient experience domain and is based on patient perspective as gathered via the Healthcare Consumer Assessment of Healthcare Providers and Systems survey (HCAHPS). Our system chose to implement simultaneous pilot activities to train our 6 Hospitalist groups, obtain Hospitalist medical director buy in and deliver timely physician group feedback in a transparent manner. In addition, a single hospital was used as a pilot site to establish behavioral expectations and empower our front line staff with an innovative “One Thing Different” campaign. Varying results were seen by our different Hospitalist groups and while the group training was the same, it was the level of engagement of the Hospitalist medical director that made a significant difference in the results. Hospitalist group A went from 31st percentile to a current score of 70th percentile; Hospitalist Group B improved from 21st percentile to 63th percentile; Hospitalist group D went from 15th to 31st percentile. Hospitalist Group C improved from 3rd percentile to 25th percentile in just 6 months of project initiation. For the hospital pilot, the average monthly overall rate the hospital score increased from a starting score of 69.2% to 73.96% with the final FY 17 month reaching 77.5%. Currently, the overall rate the hospital score has sustained and is at 73.9%
How have Patients\u27 Experiences of Cancer Care Been Linked to Survival? A Systematic Review
Get PDFPatient experience of care remains an important indicator of health care quality. Although studies show care experiences are associated with health outcomes for some conditions, the situation for cancer is unclear. New datasets on cancer patients in the US, Canada, and UK linking information on experiences and survival may enable an exploration of any association. This review aimed to identify studies linking any aspect of cancer patients’ experiences to their survival, to inform future analyses. We performed a systematic review using Medline database from January 1998 until March 2018.
The settings included outpatient oncology clinics, primary care, hospitals, and cancer centres. The participants included adult patients from different demographic groups. 16 Studies (ten observational, two clinical trials, two qualitative, and two consecutive case series) describing a wide range of settings, populations and methods met our inclusion criteria. Patients’ experiences were mostly linked to survival in quantitative studies. Satisfaction with care and psychosocial support were the aspects of experience associated with survival. Although positive associations between experience and survival were more common, negative and lack of association findings were also reported. Overall, there was no agreement on the strength, direction of the association, and the type of measurements to use. In conclusion, a wide range of studies suggest a relationship may exist between patients’ experiences of cancer care and their survival. However, this relationship is complex and methodological challenging to study. Future research should carefully consider different aspects of patient experience and care and the way in which they may affect cancer survival
A novel mobile biobehavioral regulation system for personalized trauma recovery support
Get PDFEven years after experiencing a physical trauma, individuals describe trauma-specific distress, as trauma triggers present as sensory reminders that initiate physiological reactions at time of exposure. Mobile technologies offer tremendous potential in helping individuals who have experienced trauma manage symptoms as they transition out of hospital care and move back into their communities where they are at risk of trauma trigger exposure. A personalized wearable device, tailored to a patient-specific diagnosis (e.g., PTSD) with programmable neurophysiological behavioral risk set-points, could be a useful tool in helping individuals monitor symptomology. When this type of monitoring device is also connected to a personalized recovery cue intervention on a smartwatch or phone, and activated when the wearable sensor detects heightened risk, there is the opportunity for in-the-moment symptom management. In this study we sought to understand the value for trauma survivors of using this type of personalized mobile recovery support system. Study participants were all trauma survivors or family members of survivors who were involved in the Trauma Survivors Network. A semi-structured interview was conducted with participants to understand perceptions on the utility, sensory experiences, and innovation insights of a mobile recovery sensory support system overall, and about the recovery cue intervention most specifically. Results from participant interviews inform the further development of our mobile recovery support system model in significant ways, suggesting that three components must be included: 1) Recovery cues; 2) Relationships (connecting to supportive network); and 3) Regulation (neurophysiological regulation and behavioral risk reduction).
Experience Framework
This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this len
Transformations in health information technology and the impact on patient experience
Get PDFChanges in the way we collect and use health information, and the technology that enables these processes, have transformed the patient experience in health care. Compared to an earlier focus on using health information technology (HIT) for clinical purposes, patients are now also significant users of HIT, spurring the development of Patient-Facing Health Information Technology (PFHIT). These tools allow patients to use and interact with their health information and healthcare providers is new and transformative ways. We suggest that while these transformations have significant positive impacts, there are three important considerations which must be included as HIT continues to evolve: a focus on usability of HIT tools, providing appropriate training at all levels of use, and assessing individual’ patient’s capacity to use such tools to alleviate disparities in use.
Experience Framework
This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this len