bims-paceca Biomed News
on Patient-centred care
Issue of 2022–09–04
nine papers selected by
Rob Penfold, Queensland Health
  1. Empowering Patients: Promoting Patient Education and Health Literacy.
  2. All together now - patient engagement, patient empowerment, and associated terms in personal healthcare.
  3. Maternal health literacy and health numeracy conceptualizations in public health: A scoping review.
  4. How paediatricians communicate with parents who access online health information.
  5. Helpfulness of thinking about "overdiagnosis" in shared decision making about screening.
  6. Identifying Influences in Patient Decision-making Processes in Online Health Communities: Data Science Approach.
  7. Patient Design: The Importance of Including Patients in Designing Health Care.
  8. What matters to people aged 80 and over regarding ambulatory care? A systematic review and meta-synthesis of qualitative studies.
  9. Comprehension, utility, and preferences of prostate cancer survivors for visual timelines of patient-reported outcomes co-designed for limited graph literacy: meters and emojis over comics.
  1. Cureus. 2022 Jul;14(7): e27336
    Empowering Patients: Promoting Patient Education and Health Literacy.
    Pradnya Brijmohan Bhattad, Luigi Pacifico.
      Patients are generally keen to understand and obtain more information about their medical conditions. There exists a need to develop updated and thorough yet concise patient education handouts and to encourage healthcare providers (HCPs) to use uniform patient education methods. A thorough review of literature on patient education material was performed prior to starting the study. A comparison with different resources regarding the appropriateness of patient education was done. Educating HCPs to effectively use patient educational materials incorporated into the electronic health record system, including electronic methods, such as the use of a patient portal, to help educate patients.  Strategies were formulated to reduce the amount of processing and attending time required for fetching appropriate materials and lead to fast, efficient, and effective patient education. To improve the physical and psychosocial wellbeing of a patient, personalized patient education handouts, in addition to verbal education by the HCPs, augment the betterment of patient care via shared decision making and by improving patient satisfaction and health literacy.
    Keywords:  electronic health record; health literacy; patient education; plan-do-study-act cycle; quality improvement
    DOI:  https://doi.org/10.7759/cureus.27336
  2. BMC Health Serv Res. 2022 Sep 02. 22(1): 1116
    All together now - patient engagement, patient empowerment, and associated terms in personal healthcare.
    Emily Hickmann, Peggy Richter, Hannes Schlieter.
       BACKGROUND: Patients as active partners in their personal healthcare are key drivers to reducing costs, securing an effective usage of resources, and ensuring patient-provider satisfaction. Even though these benefits are acknowledged, a theoretical framework for the plethora of concepts used in this context, such as patient engagement, patient empowerment, or patient involvement is missing. Furthermore, the heterogeneous or synonymous usage of these terms leads to miscommunication, missing standard conceptual measures, and a deficiency in theory building and testing. Our objective is to show what the relationships and distinctions between concepts focussing on patients as active partners in their personal healthcare are.
    METHODS: A systematic literature review was conducted to consolidate terms related to patients' having an active role in their healthcare. From 442 articles screened in PubMed, a final set of 17 papers was included. Any articles conceptualising or presenting relationships between the concepts were included. Information was synthesised, and contradictions were unravelled systematically. The concepts and their relationships are structured and represented by employing a concept map.
    RESULTS: Patient-centredness is a concept dominantly influenced by health care providers and can enhance patients' competencies, attitudes, and behaviours towards their personal healthcare. Enabling patients to become more empowered can ultimately lead to their greater involvement and engagement. Fostering an active role of patients can also increase their adherence to the care pathway. In general, patient engagement seems to be the most conclusive and furthest developed concept in terms of turning patients into active partners in their personal healthcare.
    CONCLUSIONS: We plead for a stricter demarcation and therefore a terminological standardisation of the terms in the future to avoid further ambiguity and miscommunication. The concept map presents a basis for a uniform understanding and application of the concepts. Through a comprehensive understanding of the terms and their dimensions, relationships between the concepts can be utilised, measures can be derived, and theory building and testing can be enhanced, leading to better acceptance and utilisation of concepts in healthcare services. Furthermore, patient engagement is presented to be the most conclusive and furthest developed concept in the subject area.
    Keywords:  Concept map; Conceptualisation; Patient empowerment; Patient engagement; Patient-centredness; Systematic literature review
    DOI:  https://doi.org/10.1186/s12913-022-08501-5
  3. Health Soc Care Community. 2022 Aug 29.
    Maternal health literacy and health numeracy conceptualizations in public health: A scoping review.
    Dahlia Khajeei, Hannah Neufeld, Lorie Donelle, Samantha B Meyer, Elena Neiterman, Nnenna A Ike, Janet Z Li.
      Despite unprecedented advancement in educational opportunities and access to information, maternal health literacy (MHL) and health numeracy (HN) skills remain low in North America. By enhancing MHL, the educated civic public-those who have the capacity, skills, and knowledge to apply prose and numerical health information-engages more proactively in public health practice. The purpose of this scoping review was to map the existing empirical evidence on MHL to work toward a better understanding of the practical implications for public health. We explored MHL and HN through the following research question: "How are maternal health literacy and health numeracy conceptualised in public health planning, implementation, and evaluation?" First, we employed a five-stage methodological framework for scoping reviews and used PRISMA-P to systematically identify eligible articles. Then, we used thematic analysis and an inductive approach guided by the research aims to identify themes related to how MHL and HN are conceptualised in empirical studies and developed an evidence table. Finally, two different reviewers coded articles using an inductive approach into six themes. We identified 1733 articles through a systematic search of five databases. After screening all the articles, 52 articles were included for thematic analysis. The final themes were: (i) sociocultural demographics; (ii) self-efficacy; (iii) communication; (iv) information seeking and operationalisation; (v) health status; and (vi) reasoning. The research evidence demonstrated limitations concerning the impact of sociocultural background on a mother's recognition of health problems and the extent of which patient-centred care is culturally and linguistically appropriate. The research evidence revealed an opportunity to address the sociocultural linguistic experience of mothers within public health practice. Our research team supports moving away from the biomedical model of evidence-based medicine and adopting evidence-based practice ensures healthcare providers develop a holistic understanding of the maternal health needs of socioculturally diverse mothers.
    Keywords:  health literacy; health numeracy; maternal health literacy; public health; scoping review
    DOI:  https://doi.org/10.1111/hsc.13981
  4. J Paediatr Child Health. 2022 Aug 23.
    How paediatricians communicate with parents who access online health information.
    Ceylan Karatas, Patrina Hy Caldwell, Karen M Scott.
       AIMS: Recent years have seen an exponential increase in the proportion of parents searching for online health information on their child's medical condition. We investigated the experiences, attitudes and approaches of paediatricians interacting with parents who search for online health information and the impact on the doctor-parent relationship.
    METHODS: This qualitative study was conducted utilising semi-structured interviews with 17 paediatric physicians, surgeons, anaesthetists and trainees working in an Australian children's hospital. Data were analysed through deductive and inductive thematic analysis using line-by-line coding.
    RESULTS: Three key themes were identified: paediatricians' experiences with, and attitudes towards, parents using online health information; paediatricians' communication approaches; and the perceived impact on the doctor-parent relationship. These themes demonstrated that most paediatricians acknowledged the information parents found and directed parents to reliable websites. Following discussions with Internet-informed parents, a few changed their management plans and a few reported discouraging parents from further searching online.
    CONCLUSIONS: Our results indicate that paediatricians predominantly used patient-centred communication strategies to care for patients in partnership with parents. Paediatricians contextualising online health information can contribute to a quality partnership with parents and facilitate shared decision-making, potentially fostering better health outcomes for children. Our conclusions may inform clinicians' communication approaches when interacting with Internet-informed parents and stimulate research about more effective doctor-parent communication approaches. In a digital age, paediatricians may benefit from employing more time-efficient approaches to manage increasing workloads with their new role of digital stewardship of parents.
    Keywords:  consumer health information; digital health; health communication; patient education; physician-patient relations
    DOI:  https://doi.org/10.1111/jpc.16176
  5. BMJ. 2022 Aug 30. 378 o2089
    Helpfulness of thinking about "overdiagnosis" in shared decision making about screening.
    Louisa Polak.
      
    DOI:  https://doi.org/10.1136/bmj.o2089
  6. J Med Internet Res. 2022 Aug 31. 24(8): e30634
    Identifying Influences in Patient Decision-making Processes in Online Health Communities: Data Science Approach.
    Mingda Li, Jinhe Shi, Yi Chen.
       BACKGROUND: In recent years, an increasing number of users have joined online health communities (OHCs) to obtain information and seek support. Patients often look for information and suggestions to support their health care decision-making. It is important to understand patient decision-making processes and identify the influences that patients receive from OHCs.
    OBJECTIVE: We aimed to identify the posts in discussion threads that have influence on users who seek help in their decision-making.
    METHODS: We proposed a definition of influence relationship of posts in discussion threads. We then developed a framework and a deep learning model for identifying influence relationships. We leveraged the state-of-the-art text relevance measurement methods to generate sparse feature vectors to present text relevance. We modeled the probability of question and action presence in a post as dense features. We then used deep learning techniques to combine the sparse and dense features to learn the influence relationships.
    RESULTS: We evaluated the proposed techniques on discussion threads from a popular cancer survivor OHC. The empirical evaluation demonstrated the effectiveness of our approach.
    CONCLUSIONS: It is feasible to identify influence relationships in OHCs. Using the proposed techniques, a significant number of discussions on an OHC were identified to have had influence. Such discussions are more likely to affect user decision-making processes and engage users' participation in OHCs. Studies on those discussions can help improve information quality, user engagement, and user experience.
    Keywords:  decision-making threads; deep learning; influence relationship; online health communities; patient engagement; text relevance measurement
    DOI:  https://doi.org/10.2196/30634
  7. J Med Internet Res. 2022 Aug 31. 24(8): e39178
    Patient Design: The Importance of Including Patients in Designing Health Care.
    Bertalan Meskó, Dave deBronkart.
      A paradigm shift is underway in the patient-clinician relationship, driven by irreversible changes in information access, yet the model under which clinicians are trained, care is conducted, and care delivery is designed has not changed significantly even though we call it "patient centered." Humanity endured centuries in which even doctors had little idea what the patient's problem really was. Science slowly solved that, and for a century, only doctors could know what was worth knowing. Today, the rise of the internet and digital health has led to the end of that era. We are already witnessing early signs of the era of participatory health: genuinely empowered people living their lives and managing their health according to their own priorities, in partnership and consultation with physicians as needed. This may feel like a threat to the physician's sacred role, but it is no more so than when physicians adopted informed consent and then shared decision-making. In the 2010s, many pharmaceutical, medical, and health care companies started to use patient centricity as a mantra. We argue that to drive this paradigm change fully into existence, we need to shift "patient centricity" from a relatively passive process, driven by industry needs, into a far more active, collaborative process driven by both parties' needs and preferences. To build this new world of practice and workflow, we simply must engage with patients as true partners. To achieve medicine's new potential, it must be optimized around the wants and priorities of the ultimate stakeholder-the party that has the most at stake in how it all plays out: the patient. Patient design is the approach that can make it happen.
    Keywords:  digital health; empowerment; engagement; future; involvement; participation; participatory; patient; patient centered; patient centred; patient centric; patient design; patient focus; user design
    DOI:  https://doi.org/10.2196/39178
  8. Eur J Ageing. 2022 Sep;19(3): 325-339
    What matters to people aged 80 and over regarding ambulatory care? A systematic review and meta-synthesis of qualitative studies.
    Angélique Herrler, Helena Kukla, Vera Vennedey, Stephanie Stock.
      The growing percentage of the population aged 80 and over is challenging for healthcare systems, as frailty and other complex health issues are common in this age group. In order to provide patient-centered ambulatory healthcare, their preferences and expectations need to be explored. Therefore, the aim of this study was to systematically search for and synthesize qualitative evidence on how people aged 80 and over believe ambulatory healthcare (medical and nursing care) should be delivered to them. Medline, PsycINFO, CINAHL, Web of Science Core Collection and Google Scholar were searched for full research reports of qualitative studies focusing on the preferences, wishes, needs, expectations and experiences of people aged 80 and over regarding ambulatory medical and nursing care. The results were screened by two independent reviewers using a two-step approach. The included studies were meta-synthesized using Thomas and Harden's 'thematic synthesis' approach in order to gain a new, second-order interpretation of the findings of the primary studies. In the intermediate synthesis step, 14 aspects of healthcare structures and care relationships were identified as relevant. Based on these, three underlying wishes were found: feeling safe, feeling like a meaningful human being, and maintaining control and independence. The results of this review are in line with other research, such as reviews focusing on the preferences of the younger age group (65-80). However, the importance of aspects of care relationships as an integral part of favorable ambulatory healthcare and the wish to be strengthened as a meaningful human being are emphasized more strongly.
    Supplementary Information: The online version contains supplementary material available at 10.1007/s10433-021-00633-7.
    Keywords:  80 and over; Aged; Ambulatory care; Patient preferences; Patient-centered care; Qualitative research; Systematic review
    DOI:  https://doi.org/10.1007/s10433-021-00633-7
  9. J Am Med Inform Assoc. 2022 Aug 30. pii: ocac148. [Epub ahead of print]
    Comprehension, utility, and preferences of prostate cancer survivors for visual timelines of patient-reported outcomes co-designed for limited graph literacy: meters and emojis over comics.
    Lauren E Snyder, Daniel F Phan, Kristen C Williams, Eduardo Piqueiras, Sarah E Connor, Sheba George, Lorna Kwan, Jefersson Villatoro Chavez, Megha D Tandel, Stanley K Frencher, Mark S Litwin, John L Gore, Andrea L Hartzler.
       OBJECTIVE: Visual timelines of patient-reported outcomes (PRO) can help prostate cancer survivors manage longitudinal data, compare with population averages, and consider future trajectories. PRO visualizations are most effective when designed with deliberate consideration of users. Yet, graph literacy is often overlooked as a design constraint, particularly when users with limited graph literacy are not engaged in their development. We conducted user testing to assess comprehension, utility, and preference of longitudinal PRO visualizations designed for prostate cancer survivors with limited literacy.
    MATERIALS AND METHODS: Building upon our prior work co-designing longitudinal PRO visualizations with survivors, we engaged 18 prostate cancer survivors in a user study to assess 4 prototypes: Meter, Words, Comic, and Emoji. During remote sessions, we collected data on prototype comprehension (gist and verbatim), utility, and preference.
    RESULTS: Participants were aged 61-77 (M = 69), of whom half were African American. The majority of participants had less than a college degree (95%), had inadequate health literacy (78%), and low graph literacy (89%). Among the 4 prototypes, Meter had the best gist comprehension and was preferred. Emoji was also preferred, had the highest verbatim comprehension, and highest rated utility, including helpfulness, confidence, and satisfaction. Meter and Words both rated mid-range for utility, and Words scored lower than Emoji and Meter for comprehension. Comic had the poorest comprehension, lowest utility, and was least preferred.
    DISCUSSION: Findings identify design considerations for PRO visualizations, contributing to the knowledge base for visualization best practices. We describe our process to meaningfully engage patients from diverse and hard-to-reach groups for remote user testing, an important endeavor for health equity in biomedical informatics.
    CONCLUSION: Graph literacy is an important design consideration for PRO visualizations. Biomedical informatics researchers should be intentional in understanding user needs by involving diverse and representative individuals during development.
    Keywords:  consumer health information; health education; health literacy; patient-reported outcome measure; user-centered design
    DOI:  https://doi.org/10.1093/jamia/ocac148
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