By Stephanie Corder, ND, RN, CHCP, National Jewish Health, Office of Professional Education. Email her at firstname.lastname@example.org.
“Nothing about me without me” was the rallying cry early in the patient-centered care movement. This phrase was reportedly coined during a panel discussion with Dr. Tom Delbanco in 19941 and energized a crusade for improved engagement of the patient and family in healthcare decision making. More recently, the Institute for Healthcare Improvement’s (IHI) campaign “What Matters”2 recommends that providers move away from asking, “What is the matter with you?” to “What matters to you?”3 suggesting that meaningful conversations that nurture genuine partnerships foster improved understanding. Over the past 20 years, these shifting perspectives have resulted in regulatory and policy changes that more effectively support “patient-centered care.” While these changes represent a welcome move away from the paternalistic approaches that dominated the medical landscape in the 20th century, there is work still to be done to achieve true person-centered healthcare (PCH). Providers of continuing professional education are uniquely positioned to foster the adoption of evidence-based strategies and initiatives that support shared decision making (SDM) and person-centered care.
In order to develop and design educational activities that support SDM and PCH, continuing professional development providers must understand the key drivers that support integration of the patient perspective into the healthcare infrastructure. For example, improving the overall experience of care is one of the key dimensions in the IHI’s Triple Aim Initiative and has resulted on transformative efforts to optimizing health system performance related to an improved patient experience.4 In addition, the National Quality Forum (NQF), Hospital Consumer Assessment of Healthcare Providers (HCAHPS) and The Joint Commission (TJC) have adopted quality standards focused on patient satisfaction, shared decision making and improved access to healthcare information.5-7 All of these efforts have provided important incentives supporting the paradigm shift toward PCH. Tangible evidence of this shift can be seen in value-based delivery models and reimbursement systems that reward organizations for including the patient as a critical member of the care team. Specifically, SDM models embracing the inclusion of patient values and preferences into personalized treatment plans have demonstrated increased patient satisfaction.3 The need for a shift to patient and family-centered care is punctuated by an increasingly competitive marketplace and consumer demand for a healthcare environment that is engaging and accessible. In a survey conducted in the second quarter of 2018, Black Book found that 92 percent of healthcare consumers said that improving the customer experience should be a top strategic priority for medical providers.8 Consumers surveyed indicated that enhanced digital tools and virtual access to providers coupled with online scheduling and payment options are of paramount importance. Thus, a whole new world of possibilities for engaging patients in healthcare decisions should be explored.
As the patient experience continues to be front and center of the evolving paradigm shift toward patient-centered care and SDM in the 21st century, there are several considerations that must be taken into account. First, the human element of care must remain at the core of what drives change. In a 2014 survey, patients indicated that qualities most representative of compassionate healthcare included authentic communication; knowing something about them, active listening, eye contact and getting to know what interests them.9 Therefore, instead of using the term “patient-centered care” to represent these humanistic elements of care, a move toward “person-centered care” is more reflective of the types of authentic patient-provider relationships that patients really want. While patient-centered care implies a disease-centric, treatment focused conversation, “person-centered care” implies a human-centric, wellness focused partnership.10 Equally as important is the need to embrace person-centered education continuing professional development that supports SDM and true healthcare partnerships. This could best be represented by providing patients and their family member a voice at the table in the planning of continuing professional development activities and intentionally integrating their perspectives into the content to be delivered. As stated by Dr. Jeffrey Swigris, a pulmonologist and quality-of-life researcher, “people diagnosed with any chronic condition, at least those who have lived with one for any length of time, are experts. Only they know what it is truly like to live day-to-day with their illness.”11 Therefore, the inclusion of the patient perspective in continuing education becomes as important as providing education on emerging treatment modalities or best practices reflected in clinical practice guidelines.
In 2017, the Accreditation Council for Continuing Medical Education (ACCME) validated the need for person-centered education with new commendation criteria that provide special recognition for providers of medical education that incorporate the interest of the people who are served by the healthcare system.12 Specifically, the commendation criteria recommends that patients and public representatives are engaged in the planning and delivery of continuing medical education (CME), are involved in the planning of CME and serve as faculty in the delivery of the education, thus providing a powerful incentive for providers of continuing professional education to adopt these practices in the development and design of educational activities.
Given the fact that ACCME’s call for increased engagement of patients and public representatives in the planning and delivery of continuing education (CE) for healthcare providers is in its infancy, there remains a lack of published literature on this subject. While it is hard to ascertain to what extent patients, caregivers and public representatives are included in the planning of CE, a review of available CE programs reveals that patients and caregivers have been used in a number of ways to deliver education. As CE providers strive to achieve accreditation with commendation, they are encouraged to disseminate effective strategies for engaging patients and public representatives. At National Jewish Health, patient and caregiver perspectives have been incorporated in the following ways:
- Established patient networks by disease state
- Collaboration with patient advocacy groups
- Focus groups and patient advisors
- Participation in patient panels in live programs
- Video segments and role play for online enduring programs
In a recent CE activity, one patient who served as faculty for an online educational program on cystic fibrosis reflected on his experience stating, “Playing a part in designing educational materials was good in that it made me reflect on what I am doing daily for my health. I’d recommend that any CF’ers take advantage in designing educational materials … as I experienced, when we teach, we learn.” Another patient who provided insight into living with IPF for a live educational series reinforced the importance of including the patient voice in shared educational design, “I believe that having an actual patient using their personal experience, not just an actor playing a role, to develop and deliver the information is key to believability and acceptance.” These approach represents shared educational design (SED) inserting the patient voice into the educational activity to widen the focus on improving the patient experience of care.
As continuing education professionals work to expand efforts toward shared educational design (SED), resources that have evolved out of patient-centered care initiatives should be maximized. For example, patient advisory committees or councils are mandated for physician practices participating in the NCQA Patient Centered Medical Home (PCMH) program and are an excellent resource for identifying patients who have a desire to share their perspectives in an educational format.13 In a 2017 systematic review on the impact of patient advisors on healthcare outcomes, the authors found that patient advisory committees have had an impact on reducing medical errors, improving appointment scheduling and HCAHP scores related to patient satisfaction.14 In addition, the IHI’s Experience-Based Co-Design (EBCD) model that originated in the UK brings “narrative-based research with service design methods to improve patient and staff experiences of care.”15 The six-stages of the EBCD co-design framework offer promise for developing a deep understanding of the patient experience and its applicability for shared educational design in continuing professional development should be explored.
In conclusion, the past 20 years have seen a drastic shift toward patient-centered care, yet work remains in both the clinical care and educational realms. In order to continue to move toward person-centered care and shared educational design, clinicians and educators alike must actively seek strategies to foster true partnerships that involve and engage patients and families as team leaders in their care. As one IPF patient put it, “It takes a team and the team leader has to be the patient. The doctors support, the nurses support, the researchers support, the drug companies support … all of that is part of the team, but the team leader has to be the patient. If they don’t care then, nobody else can care as much.”
1 Quinlan, C. “Nothing About Me Without Me” – 20 years later. https://www.science37.com/blog/nothing-about-me-without-me-progress-in-participatory-healthcare/. Accessed July 11, 2018.
2 A vision for “What Matters to You?” http://www.ihi.org/Topics/WhatMatters/Pages/default.aspx.
Accessed September 6, 2018.
3 Barry, M, Edgman-Levitan, PA. Shared decision making – The pinnacle of patient-centered care. N Engl J Med 2012: 366:780-781. DOI: 10.1056/NEJMp1109283.
4 Institute for Healthcare Improvement. The IHI Triple Aim. http://www.ihi.org/Engage/Initiatives/TripleAim/Pages/default.aspx. Accessed July 11, 2018.
5 National Quality Forum. Measuring performance. https://www.qualityforum.org/measuring_performance/measuring_performance.aspx. Accessed September 6, 2018.
6 Centers for Medicare & Medicaid Services. HCAHPS: Patients’ perspectives of care survey. https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/HospitalQualityInits/HospitalHCAHPS.html. Accessed July 11, 2018.
7 The Joint Commission. Facts about patient-centered communications. https://www.jointcommission.org/facts_about_patient-centered_communications/. Accessed December 11, 2018.
8 Lagasse, J. Patient experience is a big opportunity for hospitals to drive revenue, Black Book Says. https://www.healthcarefinancenews.com/news/patient-experience-big-opportunity-hospitals-drive-revenue-black-book-says. Accessed July 11, 2018.
9 The Swartz Center for Compassionate Healthcare. Understanding what patients want. http://www.theschwartzcenter.org/partnering-with-patients/understanding-what-patients-want/. Accessed December 11, 2018.
10 Van Horn, K. “Nothing About Me Without Me”, A person (not patient) centric approach to healthcare delivery. https://medium.com/@katievanhornhu/nothing-about-me-without-me-a-person-not-patient-centric-approach-to-healthcare-delivery-41028cd62c25. Accessed July 11, 2018.
11 Swigris, J. Patient centered approach to care in chronic disease. Am J Med Sci 2018. DOI: https://doi.org/10.1016/j.amjms.2018.08.008.
12 Accreditation Council for Continuing Medical Education. ACCME menu of criteria for accreditation with commendation. http://www.accme.org/publications/accme-menu-criteria-for-accreditation-commendation-wheel. Accessed September 6, 2018.
13 National Center for Quality Assurance. NCQA PCMH Recognition: Concepts. https://www.ncqa.org/programs/health-care-providers-practices/patient-centered-medical-home-pcmh/pcmh-concepts/. Accessed December 11, 2018.
14 Sharma, A, Knox, M, Mleczko, V, Nwando Olayiwola, J. The impact of patient advisors on healthcare outcomes: A Systematic Review. BMC Health Serv Res. 2017;17:693. Jhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC5651621/. Accessed September 6, 2018.
15 Institute for Healthcare Improvement. Experience-Based Co-Design of Health Care Services (EBCD). http://www.ihi.org/resources/Pages/Publications/Experience-Based-Co-Design-Health-Care-Services-Innovation-Case-Study.aspx. Accessed July 11, 2018.