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Patient and Consumer Engagement in Health Care and Wellbeing: Challenges and Opportunities for a Participatory Health Approach

A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601).

Deadline for manuscript submissions: closed (31 March 2023) | Viewed by 22672

Special Issue Editors

Department of Brain and Behavioural Sciences, University of Pavia, 27100 Pavia, Italy
Interests: patient engagement in healthcare; patient-centered medicine, communication and medical practice; assessments of patient and consumer activation; cancer and palliative care; mental health; patient education in chronic conditions; medical psychology, qualitative methods
Special Issues, Collections and Topics in MDPI journals
1. Faculty of Agriculture, Food and Environmental Sciences, Università Cattolica del Sacro Cuore, Via Milano 24, 26100 Cremona, Italy
2. EngageMinds HUB – Consumer, Food & Health Engagement Research Center, Università Cattolica del Sacro Cuore, 20123 Milan, Italy
Interests: food consumption; consumer psychology; consumer acceptance; engagement; food involvement
Special Issues, Collections and Topics in MDPI journals

Special Issue Information

Dear Colleagues,

I am pleased to announce a Special Issue of the International Journal of Environmental Research and Public Health entitled “Patient and Consumer Engagement in Healthcare and Wellbeing: Challenges and Opportunities for a Participatory Health Approach”. For detailed information on this journal, I refer you to https://0-www-mdpi-com.brum.beds.ac.uk/journal/ijerph.

Over time, the care and health needs of people are changing and becoming increasingly complex, and there is work to do to ensure that services deliver high-quality and evidence-based interventions/actions that meet the health needs and expectations of patients and consumers.

Patient and consumer health engagement is a key element of effective health management and promotion, which helps to ensure that the needs of people are adequately met. Participatory approaches to health that systematically include consumers/patients and other stakeholders are broadly advocated. Patients and consumers have important knowledge and experience that may feed into health and care management programs, research, and policy, contributing to their effectiveness and equity. Equally importantly, patient and consumer engagement have the potential to enhance health literacy, healthy food choices, preventive behavior, adherence to treatment, patient and consumer safety, satisfaction with care, quality of life, and reduced healthcare costs.

Moreover, in health and care management, professionals (practitioners, managers, researchers, policymakers) often struggle to sufficiently engage consumers and patients. Insights into best practices, explaining what works, how it works, how to measure the impact, and in which context, are needed to improve patient and consumer engagement in health promotion and care management. Patient and consumer engagement can be highly valuable at numerous levels, but particular attention should be paid to the process of engaging with patients and related ethical issues. For this reason, the values underlying patient and consumer health engagement need to be explored and further explicated to avoid the risk of oversimplification.

This Special Issue on ‘Patient and Consumer Engagement in Healthcare, and Wellbeing: Challenges and Opportunities for a Participatory Health Approach’ will integrate research from multiple perspectives, disciplines, and methodologies to better understand what constitutes effective and valuable patient and consumer health processes and how best to promote them. This Special Issue will publish research and studies that describe different ways that the engagement of patients and consumers in health processes can be enhanced.

The aim is to give readers valuable insights into what works well for enhancing consumer and patient health and care engagement. The Guest Editors would like to invite original research (both quantitative and qualitative), reviews, theoretical frameworks, methodological reflections, and case studies on the following topics:

  • Methodologies and up-to-date methodological frameworks used to enhance patient and consumer health engagement;
  • Design of interventions devoted to promoting patient and consumer health engagement;
  • The impact (e.g., health literacy, healthy food choices, patient and consumer safety; quality of life; clinical outcomes; cost of care) of patient and consumer health engagement;
  • Reflections upon the role of professionals, managers, researchers, and policymakers in promoting patient and consumer health engagement;
  • Discussions of practical and ethical challenges related to patient and consumer health engagement.

The settings and situations can be diverse, for example, chronic care management, patient advocacy initiatives, drug development, mental health, welfare and public health programs, medical education, organizational interventions, patient and consumer health education, consumer food involvement; healthy food choices; digital health.

The final date for submission is 31 September 2020. However, we will review submitted manuscripts when they are received and will publish papers online when they are accepted.

Dr. Serena Barello
Prof. Guendalina Graffigna
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • Patient engagement in healthcare
  • Consumer health engagement
  • Participatory health
  • Shared decision making
  • Healthcare
  • Digital health
  • Medical humanities and medical education
  • Patient advocacy
  • Food habits and healthy food choices

Published Papers (8 papers)

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Research

10 pages, 338 KiB  
Article
Patients’ Engagement in Early Detection of COVID-19 Symptoms: An Observational Study in the Very Early Peak of the Pandemic in Italy in 2020
by Lorenzo Palamenghi, Fabiola Giudici, Guendalina Graffigna and Daniele Generali
Int. J. Environ. Res. Public Health 2022, 19(5), 3058; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19053058 - 05 Mar 2022
Cited by 1 | Viewed by 1257
Abstract
COVID-19 exerted a strong impact on the Italian healthcare systems, which in turn resulted in a reduction in the citizens’ trust towards healthcare authorities. Moreover, the focused attention on the typical COVID-19 symptoms (fever, cough) has also impacted the social representation of health [...] Read more.
COVID-19 exerted a strong impact on the Italian healthcare systems, which in turn resulted in a reduction in the citizens’ trust towards healthcare authorities. Moreover, the focused attention on the typical COVID-19 symptoms (fever, cough) has also impacted the social representation of health priorities, potentially reducing the perceived importance and severity of other symptoms. This study aimed to determine the association of general-practitioner (GP) contact with various symptoms during the COVID-19 pandemic in Cremona, an Italian city at the very epicentre of the pandemic. Between April and June 2020, an anonymous survey was completed by 2161 respondents. Logistic-regression analyses were used to examine the associations of GP contact with sociodemographic characteristics and the presence of symptoms. Of the 2161 respondents (43.5% female, 75.0% aged less than 55 years), 959 (44.4%) reported experiencing various symptoms and 33.3% contacted a GP. GP contact was significantly associated with poor appetite (OR, 2.42; 95% CI 1.63 to 3.62; p < 0.001), taste dysfunctions (OR 1.67; 95% CI 1.20 to 2.34; p < 0.001) and sleepiness during the day (OR 4.15; 95% CI 2.13 to 8.09; p = 0.002). None of the gastrointestinal symptoms resulted in significantly increasing the likelihood of contacting a GP. This study offers a unique observation of citizens’ attitudes and behaviours in early symptom communication/detection during the initial peak of the Italian COVID-19 pandemic. Full article
14 pages, 322 KiB  
Article
Older Adults’ Engagement in Residential Care: Pitfalls, Potentials, and the Role of ICTs
by Marije Blok, Barbara Groot, Johanna M. Huijg and Alice H. de Boer
Int. J. Environ. Res. Public Health 2022, 19(5), 2876; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19052876 - 01 Mar 2022
Cited by 3 | Viewed by 2314
Abstract
Over the previous years, the residential care sector has gone through a transition from a rather paternalistic approach towards a more democratic way of caregiving. Nevertheless, many care organizations still find it challenging to engage their residents in the process of care. In [...] Read more.
Over the previous years, the residential care sector has gone through a transition from a rather paternalistic approach towards a more democratic way of caregiving. Nevertheless, many care organizations still find it challenging to engage their residents in the process of care. In this study, we investigated the challenges regarding the engagement of older adults in residential care. As recent studies indicated the increasing opportunities of ICTs, we paid particular attention to this in the process of engagement. We followed a participatory action research approach among caregivers and older adults at a somatic care department in a care residence in the Netherlands. Methods used included 15 participants in two homogeneous group sessions, reflections on action in practice, and one mixed focus group. Our findings show that both caregivers and older adults acknowledge the importance of engagement in daily care. However, their different perspectives on how this should take place, made the actual engagement of older adults a challenge. We determined three dilemmas complicating this engagement in care, and labeled these (1) autonomy versus dependence; (2) personal experiences versus privacy; and (3) happiness versus honesty. We found different ways of how caregivers and older adults deal with these dilemma’s in practice and defined these in terms of pitfalls and potentials. ICTs were shown to reinforce both the pitfalls and potentials. Paying attention to these challenges in residential care, including how caregivers and older adults deal with these challenges, will encourage a mutual understanding and actual engagement in decisions on daily care. Further research is recommended on the role of organizations’ management, older adults’ relatives, or older adults with cognitive impairments. Full article
16 pages, 1455 KiB  
Article
Designing a Patient-Friendly Website for Newly Diagnosed Cancer Patients with the Participatory Health Research Approach
by Juliane Rackerseder, Carolin Hornbach, Peter Dicks, Hedy Kerek-Bodden and Theresia Krieger
Int. J. Environ. Res. Public Health 2022, 19(4), 1969; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19041969 - 10 Feb 2022
Cited by 1 | Viewed by 1711
Abstract
High-quality and user-friendly patient information material (PIM) is essential for understanding and accepting a new care programme. When optimising the PIM of the integrated, cross-sectoral psycho-oncological (isPO) care programme, the design of the fifth element of the patient information strategy—the patient-friendly website—was still [...] Read more.
High-quality and user-friendly patient information material (PIM) is essential for understanding and accepting a new care programme. When optimising the PIM of the integrated, cross-sectoral psycho-oncological (isPO) care programme, the design of the fifth element of the patient information strategy—the patient-friendly website—was still pending. In this paper, the iterative design process of the patient-friendly isPO website is described. We applied the participatory health research (PHR) approach to enable high levels of participation of its respective end-users (e.g., cancer survivors), service providers, and experts. The design included six steps: (1) initiation, (2) planning, (3) initial idea exploration, (4) creation of a first working version, (5) three optimisation loops, and (6) dissemination. An exploratory mixed-methods design has been used. Qualitative data collection included document analysis, interviews, and participatory action research (PAR) loops with focus groups. Finally, the quality of the newly designed website was quantitatively assessed with the UPIM-Check, a user-friendly instrument for assessing and optimising PIM. The PHR approach was indispensable for the design of our needs-oriented, patient-friendly website. Participants’ high levels of participation strongly contributed to the products’ quality. The final descriptive statistical evaluation shows that the final website was rated very good on average by its end-users. Full article
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16 pages, 2393 KiB  
Article
Participatory Development and Preliminary Psychometric Properties of the User-Friendly Patient Information Material Checklist (UPIM-Check)
by Sandra Salm, Judith Mollenhauer, Carolin Hornbach, Natalia Cecon, Antje Dresen, Stefanie Houwaart, Anna Arning, Andrea Göttel, Kathrin Schwickerath, Holger Pfaff, Nadine Scholten and Theresia Krieger
Int. J. Environ. Res. Public Health 2021, 18(16), 8773; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18168773 - 19 Aug 2021
Cited by 3 | Viewed by 2049
Abstract
The aims of this study were (1) to design a user-friendly instrument to assess and optimize patient information material (PIM), (2) to develop an English version, and (3) to test its psychometric properties. The instrument was needed to optimize the top-down developed PIM [...] Read more.
The aims of this study were (1) to design a user-friendly instrument to assess and optimize patient information material (PIM), (2) to develop an English version, and (3) to test its psychometric properties. The instrument was needed to optimize the top-down developed PIM of the psycho-oncological care programme isPO. First, a literature-based PIM checklist was developed by a team of patient representatives, cancer care experts and professional researchers. Next, the checklist’s reliability and validity were analysed by having cancer survivors assess the initial and optimized version of the isPO-leaflet. The User-friendly Patient Information Material Checklist (UPIM-Check), developed participatorily, was found to be effective for evaluating PIM. It uses a traffic light scale, and suggestions for improvement can be given for each criterion. Its reliability appeared to be excellent (α = 0.927). The optimized leaflet was rated significantly better than the initial one. The UPIM-Check is a reliable and valid instrument, which enables end-users (e.g., patients) to assess and optimize the quality of PIM according to scientific criteria and the needs of end-users. A bottom-up approach was essential for developing and validating the UPIM-Check. End-users constantly contributed with their specific knowledge. Thus, their position as co-researchers was significantly strengthened. Full article
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18 pages, 494 KiB  
Article
Financial Literacy, Health Engagement, and Residents’ Health: Evidence from China
by Qilong Zheng, Zhen Peng and Shun Ding
Int. J. Environ. Res. Public Health 2021, 18(8), 4202; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18084202 - 15 Apr 2021
Cited by 10 | Viewed by 4238
Abstract
This study took residents’ health level as the research object, adopted the perspective of financial literacy, and used the 2014–2018 China Family Panel Studies data to analyze the impact of financial literacy on the residents’ health. The study found that financial literacy could [...] Read more.
This study took residents’ health level as the research object, adopted the perspective of financial literacy, and used the 2014–2018 China Family Panel Studies data to analyze the impact of financial literacy on the residents’ health. The study found that financial literacy could have a significant positive impact on the residents’ health, with long-term effects. Furthermore, it promoted the residents’ health engagement and improved their health through the intermediary effects of income and health expenditure. In addition, the impact of financial literacy on the residents’ health was heterogeneous between urban and rural areas. Compared with the case for rural residents, the improvement of financial literacy significantly improved the health of the urban residents. The outcomes of this research were the exploration of means to improve residents’ health from a new economic perspective, promote residents’ health engagement, and improve residents’ health. Full article
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15 pages, 782 KiB  
Article
Evaluation of the Use of Shared Decision Making in Breast Cancer: International Survey
by Marta Maes-Carballo, Manuel Martín-Díaz, Luciano Mignini, Khalid Saeed Khan, Rubén Trigueros and Aurora Bueno-Cavanillas
Int. J. Environ. Res. Public Health 2021, 18(4), 2128; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18042128 - 22 Feb 2021
Cited by 12 | Viewed by 2557
Abstract
Objectives: To assess shared decision-making (SDM) knowledge, attitude and application among health professionals involved in breast cancer (BC) treatment. Materials and Methods: A cross-sectional study based on an online questionnaire, sent by several professional societies to health professionals involved in BC management. There [...] Read more.
Objectives: To assess shared decision-making (SDM) knowledge, attitude and application among health professionals involved in breast cancer (BC) treatment. Materials and Methods: A cross-sectional study based on an online questionnaire, sent by several professional societies to health professionals involved in BC management. There were 26 questions which combined demographic and professional data with some items measured on a Likert-type scale. Results: The participation (459/541; 84.84%) and completion (443/459; 96.51%) rates were high. Participants strongly agreed or agreed in 69.57% (16/23) of their responses. The majority stated that they knew of SDM (mean 4.43 (4.36–4.55)) and were in favour of its implementation (mean 4.58 (4.51–4.64)). They highlighted that SDM practice was not adequate due to lack of resources (3.46 (3.37–3.55)) and agreed on policies that improved its implementation (3.96 (3.88–4.04)). The main advantage of SDM for participants was patient satisfaction (38%), and the main disadvantage was the patients’ paucity of knowledge to understand their disease (24%). The main obstacle indicated was the lack of time and resources (40%). Conclusions: New policies must be designed for adequate training of professionals in integrating SDM in clinical practice, preparing them to use SDM with adequate resources and time provided. Full article
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15 pages, 2162 KiB  
Article
Information or Habit: What Health Policy Makers Should Know about the Drivers of Self-Medication among Romanians
by Elena Druică, Cristian Băicuș, Rodica Ianole-Călin and Ronald Fischer
Int. J. Environ. Res. Public Health 2021, 18(2), 689; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18020689 - 14 Jan 2021
Cited by 6 | Viewed by 2656
Abstract
We use the Knowledge, Perceptions and Practices framework to analyze determinants of three types of self-medication practices in Romania: (1) self-medication in the case of cold/flu/viral infections; (2) taking non-prescribed medicine in general; and (3) self-medication based on recommendations by others. We analyzed [...] Read more.
We use the Knowledge, Perceptions and Practices framework to analyze determinants of three types of self-medication practices in Romania: (1) self-medication in the case of cold/flu/viral infections; (2) taking non-prescribed medicine in general; and (3) self-medication based on recommendations by others. We analyzed 706 responses to an online survey and used a factor-based Partial Least Squares algorithm (PLSF) to estimate the relationships between each type of self-medication and possible predictors. Our results show that self–medication is strongly predicted by non-cognitive behavioral factors such as habits and similarity of symptoms, while cognitive determinants such as knowledge and understanding of potential risks are not significantly associated with self-medication behaviors. This paper identifies nonlinear relationships among self-medication practices and its predictors and discusses how our results can help policymakers calibrate interventions with better accuracy. Full article
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27 pages, 2833 KiB  
Article
Italian Consensus Statement on Patient Engagement in Chronic Care: Process and Outcomes
by Guendalina Graffigna, Serena Barello, Giuseppe Riva, Massimo Corbo, Gianfranco Damiani, Primiano Iannone, Albino Claudio Bosio and Walter Ricciardi
Int. J. Environ. Res. Public Health 2020, 17(11), 4167; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17114167 - 11 Jun 2020
Cited by 15 | Viewed by 3789
Abstract
Patient engagement has been recognized as a key priority in chronic care. However, scholars agree that guidelines are needed to ensure effective patient engagement strategies. To this end, a Consensus Conference process was promoted with the following methodological steps: (1) extensive literature review [...] Read more.
Patient engagement has been recognized as a key priority in chronic care. However, scholars agree that guidelines are needed to ensure effective patient engagement strategies. To this end, a Consensus Conference process was promoted with the following methodological steps: (1) extensive literature review about patient engagement initiatives in chronic care; (2) a stakeholders survey to collect best practices and (3) workshops with experts. On the basis of the information collected, a consensus statement was drafted, revised, and finalized by a panel of select renowned experts. These experts agreed in defining engagement as an eco-systemic concept involving multiple actors all of which contribute to influence patients’ willingness and ability to engage in chronic care. Moreover, experts recommended, whenever possible, to adopt standardized instruments to assess engagement levels and related unmet needs. Then, experts strongly advised appropriate trainings for healthcare professionals about patient engagement strategies. Furthermore, the importance of promoting healthcare professionals’ wellbeing has been advocated. Family caregivers, as well as patients’ organizations - should be trained and engaged to increase the effectiveness of interventions dedicated to patients. Finally, experts agreed that digital technologies should be considered as a crucial enhancer for patient engagement in chronic care. Full article
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