bims-paceca 2022-07-24 papers

bims-paceca

Biomed News

on Patient-centred care

Issue of 2022–07–24
nine papers selected by
Rob Penfold, Queensland Health

Improving patient communication through the duty of candour and shared decision-making.
Understanding and mitigating low health literacy.
Building from Patient Experiences to Deliver Patient-Focused Healthcare Systems in Collaboration with Patients: A Call to Action.
Vagueness and variety in person-centred care.
Combining Machine Learning, Patient-Reported Outcomes, and Value-Based Health Care: Protocol for Scoping Reviews.
Person-centred care in primary care: What works for whom, how and in what circumstances?
Developing Patient-Centered Real-World Evidence: Emerging Methods Recommendations From a Consensus Process.
Improving Access to Patient Education: an Audit of Extant Educational Materials.
Implementation of a patient-teaching workshop to improve pharmacy students' competencies in patient-centered communication: a case report.

Br J Nurs. 2022 Jul 21. 31(14): 758-759

Improving patient communication through the duty of candour and shared decision-making.

John Tingle.

John Tingle, Lecturer in Law, Birmingham Law School, University of Birmingham, discusses some recent reports on the duty of candour and shared decision-making.

DOI: https://doi.org/10.12968/bjon.2022.31.14.758
Nurs Stand. 2022 Jul 20.

Understanding and mitigating low health literacy.

Dominique Byrne.

  To take control of their health, patients and their families and carers need to understand the information they receive from healthcare professionals and be able to apply that information - in short, they require optimal health literacy. People with low health literacy may find it challenging to manage their condition and take steps to prevent ill-health, which may lead to an increased use of healthcare services. Low health literacy is one of the main barriers preventing healthcare professionals from adequately transmitting information to people in their care. It is crucial that nurses do not assume that everyone will understand information about their health, so nurses should adapt their communication and create an environment where people feel empowered to ask questions. This article describes factors affecting health literacy, explains the consequences of low health literacy, and identifies strategies and techniques nurses can use to mitigate low health literacy.

Keywords:  clinical; communication; cultural competence; culture; diversity; equality; health literacy; health promotion; inclusion; patient education; patients; professional; public health; self-care

DOI:  https://doi.org/10.7748/ns.2022.e11875
Ther Innov Regul Sci. 2022 Jul 19.

Building from Patient Experiences to Deliver Patient-Focused Healthcare Systems in Collaboration with Patients: A Call to Action.

Karlin Schroeder, Neil Bertelsen, Jessica Scott, Katherine Deane, Laura Dormer, Devika Nair, Jim Elliott, Sarah Krug, Ify Sargeant, Hayley Chapman, Nicholas Brooke.

  Patients' experiences of their diagnosis, condition, and treatment (including the impact on their lives), and their experiences surrounding expectations of care, are becoming increasingly important in shaping healthcare systems that meet the evolving needs and priorities of different patient communities over time; this is an ongoing goal of all healthcare stakeholders. Current approaches that capture patient experiences with data are fragmented, resulting in duplication of effort, numerous requests for information, and increased patient burden. Application of patient experience data to inform healthcare decisions is still emerging and there remains an opportunity to align diverse stakeholders on the value of these data to strengthen healthcare systems. Given the collective value of understanding patient experiences across multiple stakeholder groups, we propose a more aligned approach to the collection of patient experience data. This approach is built on the principle that the patients' experiences are the starting point, and not just something to be considered at the end of the process. It must also be based on meaningful patient engagement, where patients are collaborators and decision makers at each step, thereby ensuring their needs and priorities are accurately reflected. The resulting data and evidence should be made available for all stakeholders, to inform their decision making and healthcare strategies in ways that meet patient priorities. We call for multi-stakeholder collaboration that will deliver healthcare systems and interventions that are better centered around and tailored to patient experiences, and that will help address patients' unmet needs.

Keywords:  Collective value patient experience; Patient experience data; Patient-focused healthcare

DOI:  https://doi.org/10.1007/s43441-022-00432-x
Wellcome Open Res. 2022 ;7 170

Vagueness and variety in person-centred care.

Polly Mitchell, Alan Cribb, Vikki Entwistle.

  Person-centred care is a cornerstone of contemporary health policy, research and practice. However, many researchers and practitioners worry that it lacks a 'clear definition and method of measurement,' and that this creates problems for the implementation of person-centred care and limits understanding of its benefits. In this paper we urge caution about this concern and resist calls for a clear, settled definition and measurement approach. We develop a philosophical and conceptual analysis which is grounded in the body of literature concerning the theory and practice of person-centred care. We consider a range of influential definitional frameworks of person-centred care, highlighting their differences and showing that they do not correspond to a clearly circumscribed and consistent underlying concept. We argue that a degree of indeterminacy and vagueness should not be seen as a problem with the concept of person-centred care; these are features of a rich and contested concept which exists prior to and outside of practical and technical operational definitions and applications. We defend the value of operating with multiple accounts of person-centred care, arguing that what counts as being person-centred can vary across different care contexts, in relation to different patient groups, and as a reflection of different, defensible ethical perspectives. Although the idea of a single, agreed definition is attractive and may seem to be a practical or even necessary step towards meaningful and coordinated action, we argue that this is only the case in a qualified sense. Comprehensive attempts to narrow down the concept in this way should be resisted, as they risk undermining what it is that makes person-centredness a valuable concept in healthcare.

Keywords:  definition; ethics; framework; patient-centred care; person-centred care; pluralism; values

DOI:  https://doi.org/10.12688/wellcomeopenres.17970.1
JMIR Res Protoc. 2022 Jul 18. 11(7): e36395

Combining Machine Learning, Patient-Reported Outcomes, and Value-Based Health Care: Protocol for Scoping Reviews.

Tyler Raclin, Amy Price, Christopher Stave, Eugenia Lee, Biren Reddy, Junsung Kim, Larry Chu.

   BACKGROUND: Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are self-reporting tools that can measure important information about patients, such as health priorities, experience, and perception of outcome. The use of traditional objective measures such as vital signs and lab values can be supplemented with these self-reported patient measures to provide a more complete picture of a patient's health status. Machine learning, the use of computer algorithms that improve automatically through experience, is a powerful tool in health care that often does not use subjective information shared by patients. However, machine learning has largely been based on objective measures and has been developed without patient or public input. Algorithms often do not have access to critical information from patients and may be missing priorities and measures that matter to patients. Combining objective measures with patient-reported measures can improve the ability of machine learning algorithms to assess patients' health status and improve the delivery of health care.
OBJECTIVE: The objective of this scoping review is to identify gaps and benefits in the way machine learning is integrated with patient-reported outcomes for the development of improved public and patient partnerships in research and health care.
METHODS: We reviewed the following 3 questions to learn from existing literature about the reported gaps and best methods for combining machine learning and patient-reported outcomes: (1) How are the public engaged as involved partners in the development of artificial intelligence in medicine? (2) What examples of good practice can we identify for the integration of PROMs into machine learning algorithms? (3) How has value-based health care influenced the development of artificial intelligence in health care? We searched Ovid MEDLINE(R), Embase, PsycINFO, Science Citation Index, Cochrane Library, and Database of Abstracts of Reviews of Effects in addition to PROSPERO and the ClinicalTrials website. The authors will use Covidence to screen titles and abstracts and to conduct the review. We will include systematic reviews and overviews published in any language and may explore additional study types. Quantitative, qualitative, and mixed methods studies are included in the reviews.
RESULTS: The search is completed, and Covidence software will be used to work collaboratively. We will report the review using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines and Critical Appraisal Skills Programme for systematic reviews.
CONCLUSIONS: Findings from our review will help us identify examples of good practice for how to involve the public in the development of machine learning systems as well as interventions and outcomes that have used PROMs and PREMs.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/36395.

Keywords:  algorithm; artificial intelligence; eHealth; machine learning; patient experience; patient-reported experience measures; patient-reported outcome measures; scoping review; value-based care

DOI:  https://doi.org/10.2196/36395
Health Soc Care Community. 2022 Jul 21.

Person-centred care in primary care: What works for whom, how and in what circumstances?

Anam Ahmed, Maria E T C van den Muijsenbergh, Hubertus J M Vrijhoef.

  This rapid realist review aims to explain how and why person-centred care (PCC) in primary care works (or not) among others for people with low health literacy skills and for people with a diverse ethnic and socioeconomic background, and to construct a middle-range programme theory (PT). Peered reviewed- and non-peer-reviewed literature (Jan 2013-Feb 2021) reporting on PCC in primary care was included. Selection and appraisal of documents were based on relevance and rigour according to the Realist And Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) criteria. Data on context, mechanisms and outcomes (CMO) were extracted. Based on the extracted data, CMO configurations were identified per source publication. Configurations containing all three constructs (CMO) were included in the PT. The middle-range PT demonstrates that healthcare professionals (HCPs) should be trained and equipped with the knowledge and skills to communicate effectively (i.e. in easy-to-understand words, emphatically, checking whether the patient understands everything, listening attentively) tailored to the wishes, needs and possibilities of the patient, which may lead to higher satisfaction. This way the patient will be more involved in the care process and in the shared decision-making process, which may result in improved concordance, and an improved treatment approach. A respectful and empathic attitude of the HCP plays an important role in establishing a strong therapeutic relationship and improved health (system) outcomes. Together with a good accessibility of care for patients, setting up a personalised care plan with all involved parties may positively affect the self-management skills of patients. Good collaboration within the team and between different domains is desirable to ensure good care coordination. The coherence of items related to PCC in primary care should be considered to better understand its effectiveness.

Keywords:  person-centred care; primary care; primary healthcare; realist review

DOI:  https://doi.org/10.1111/hsc.13913
Value Health. 2022 Jul 18. pii: S1098-3015(22)01997-0. [Epub ahead of print]

Developing Patient-Centered Real-World Evidence: Emerging Methods Recommendations From a Consensus Process.

Patient-Centered Real-World Evidence Working Group

   OBJECTIVES: The Joint ISPOR-ISPE Special Task Force on Real-World Evidence included patient/stakeholder engagement as a recommended good procedural practice when designing, conducting, and disseminating real-world evidence (RWE). However, there are no guidelines describing how patient experience data (PED) can be applied when designing real-world data (RWD) studies. This article describes development of consensus recommendations to guide researchers in applying PED to develop patient-centered RWE.
METHODS: A multidisciplinary advisory board, identified through recommendations of collaborators, was established to guide development of recommendations. Semistructured interviews were conducted to identify how experienced RWD researchers (n = 15) would apply PED when designing a hypothetical RWD study. Transcripts were analyzed and emerging themes developed into preliminary methods recommendations. An eDelphi survey (n = 26) was conducted to refine/develop consensus on the draft recommendations.
RESULTS: We identified 13 recommendations for incorporating PED throughout the design, conduct, and translation of RWE. The recommendations encompass themes related to the development of a patient-centered research question, designing a study, disseminating RWE, and general considerations. For example, consider how patient input can inform population/subgroups, comparators, and study period. Researchers can leverage existing information describing PED and may be able to apply those insights to studies relying on traditional RWD sources and/or patient registries.
CONCLUSIONS: Applying these emerging recommendations may improve the patient centricity of RWE through improved relevance of RWE to patient communities of interest and foster greater multidisciplinary participation and transparency in RWD research. As researchers gather experience by applying the methods recommendations, further refinement of these consensus recommendations may lead to "best practices."

Keywords:  patient centered; patient engagement; patient participation; patient-focused drug development; real-world evidence

DOI:  https://doi.org/10.1016/j.jval.2022.04.1738
J Cancer Educ. 2022 Jul 22.

Improving Access to Patient Education: an Audit of Extant Educational Materials.

Monica Kopec, Naa Kwarley Quartey, Michelle Snow, Andrew Stechkevich, Meredith Elana Giuliani, Janet Papadakos.

  Health information exchange between provider and patient, along with patient participation in their care (self-management), can lead to improved health outcomes. A step towards achieving better outcomes is the systematic provision of education materials to patients and caregivers throughout the cancer trajectory. An audit of patient education (PE) materials was conducted at a cancer center to identify content gaps and determine areas for future development. The PE audit was conducted in all outpatient clinics (13) and clinic-specific PE materials were identified, reviewed, and categorized by cancer type and under the following topics: About Cancer/Disease, Medical Tests and Imaging, Treatment, Symptom Management, Rehabilitation/Survivorship, General Wellbeing, Medical Device Care, Practical and Other. Four hundred forty-seven PE materials were included in the audit. Totals for each topic were summed and analyzed for education development opportunities. Results varied based on clinic and cancer type. Majority of the materials were found in the following clinics: Hematology (75), Genitourinary (74), and Gastrointestinal (57). The most common information topics were treatment (277), about cancer/disease (134), and symptom management (120). When broken down by cancer type, it was clear that while the collection of PE materials is well established for some diagnoses (e.g., 28 prostate cancer materials), there is a significant dearth in materials for others (e.g., 0 penile cancer materials). Audit results will be used to identify opportunities for future education material development. Determining cancer-specific information gaps is important in achieving equal information access for patients and caregivers, regardless of cancer diagnosis.

Keywords:  Audit; Cancer; Cancer center; Cancer patient; Cancer trajectory; Information access; Information exchange; Information gaps; Patient education; Patient education material

DOI:  https://doi.org/10.1007/s13187-022-02202-7
BMC Med Educ. 2022 Jul 18. 22(1): 555

Implementation of a patient-teaching workshop to improve pharmacy students' competencies in patient-centered communication: a case report.

Caroline Hache, Stéphane Honoré, Guillaume Hache.

   BACKGROUND: The pharmacist-patient relationship has evolved over recent decades and the development of clinical pharmacy requires pharmacists to take patient-centered responsibilities. This requires a specific set of skills, such as patient-centered communication. Evaluation of students' competencies in patient-centered communication is challenging in academic settings and complementary assessment methods may be designed in order to overcome the limits of traditional preceptors' ratings or objective structured clinical examination (OSCE). There is increasing interest in a more active patient role in healthcare professional education and there are very few reports about patient-led education in pharmacies. Thus, the objective of this work was to implement a patient-teaching workshop and to assess its impact on pharmacy students' competencies in patient-centered communication.
METHODS: The workshop was developed in collaboration between four patients, a senior clinical pharmacist and a lecturer in education sciences and implemented in the hospital pharmacy residency program. The main course objective was acquiring the three competencies of the Calgary-Cambridge guide to the medical interview: (i) building a relationship, (ii) conducting structured interview and (iii) gathering information. The learning process integrated: working on participants' perception of pharmacists-patient communication, a first simulated interview, didactic learning and a second simulated interview. After simulated interviews, patients and peer residents assessed learner's performance with a competency chart and provided individual feedback. Assessment methods included comparisons between the first and second interview scores and an anonymous post-course survey.
RESULTS: Forty-seven residents and 19 patient teachers attended the session. Competency scores were higher after the second interview in all three competencies as rated by both patients (+ 25%) and peer residents (+ 29%). Residents expressed a high satisfaction and reported learning about conducting interviews and soft skills contributing to the development of a relationship with patients. "The involvement of patients" was expressed as most appreciated in the majority of the evaluation charts (87%) and the residents valued the importance of collaborative and interprofessional learning during the workshop. Three themes emerged: (1) patients' expertise, (2) reliability and (3) relationship, which underlined that the students estimated the patients were credible sources of information in this pedagogical context.
CONCLUSION: This patient-teaching approach improved patient-centered competencies of pharmacy residents and promoted partnership between patients and pharmacy students.

Keywords:  Patient-led education; Pharmacy; University curriculum

DOI:  https://doi.org/10.1186/s12909-022-03618-x