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      Raising the Digital Profile of Facial Palsy: National Surveys of Patients’ and Clinicians’ Experiences of Changing UK Treatment Pathways and Views on the Future Role of Digital Technology

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          Abstract

          Background

          Facial nerve palsy leaves people unable to move muscles on the affected side of their face. Challenges exist in patients accessing facial neuromuscular retraining (NMR), a therapy used to strengthen muscle and improve nerve function. Access to therapy could potentially be improved through the use of digital technology. However, there is limited research available on patients’ and clinicians’ views about the potential benefits of such telerehabilitation based on their lived experiences of treatment pathways.

          Objective

          This study aims to gather information about facial palsy treatment pathways in the United Kingdom, barriers to accessing NMR, factors influencing patient adherence, measures used to monitor recovery, and the potential value of emerging wearable digital technology.

          Methods

          Separate surveys of patients with facial palsy and facial therapy specialists were conducted. Questionnaires explored treatment pathways and views on telerehabilitation, were co-designed with users, and followed a similar format to enable cross-referencing of responses. A follow-up survey of national specialists investigated methods used to monitor recovery in greater detail. Analysis of quantitative data was conducted allowing for data distribution. Open-text responses were analyzed using thematic content analysis.

          Results

          A total of 216 patients with facial palsy and 25 specialist therapists completed the national surveys. Significant variations were observed in individual treatment pathways. Patients reported an average of 3.27 (SD 1.60) different treatments provided by various specialists, but multidisciplinary team reviews were rare. For patients diagnosed most recently, there was evidence of more rapid initial prescribing of corticosteroids (prednisolone) and earlier referral for NMR therapy. Barriers to NMR referral included difficulties accessing funding, shortage of specialist therapists, and limited awareness of NMR among general practitioners. Patients traveled long distances to reach an NMR specialist center; 9% (8/93) of adults reported traveling ≥115 miles. The thematic content analysis demonstrates positive attitudes to the introduction of digital technology, with similar incentives and barriers identified by both patients and clinicians. The follow-up survey of 28 specialists uncovered variations in the measures currently used to monitor recovery and no agreed definitions of a clinically significant change for any of these. The main barriers to NMR adherence identified by patients and therapists could all be addressed by using suitable real-time digital technology.

          Conclusions

          The study findings provide valuable information on facial palsy treatment pathways and views on the future introduction of digital technology. Possible ways in which emerging sensor-based digital technology can improve rehabilitation and provide more rigorous evidence on effectiveness are described. It is suggested that one legacy of the COVID-19 pandemic will be lower organizational barriers to this introduction of digital technology to assist NMR delivery, especially if cost-effectiveness can be demonstrated.

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          Most cited references63

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          Standards for reporting qualitative research: a synthesis of recommendations.

          Standards for reporting exist for many types of quantitative research, but currently none exist for the broad spectrum of qualitative research. The purpose of the present study was to formulate and define standards for reporting qualitative research while preserving the requisite flexibility to accommodate various paradigms, approaches, and methods.
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            Virtual health care in the era of COVID-19

            Patients are under lockdown and health workers are at risk of infection. Paul Webster reports on how telemedicine is being embraced like never before. In the face of a surge in cases of coronavirus disease 2019 (COVID-19), physicians and health systems worldwide are racing to adopt virtualised treatment approaches that obviate the need for physical meetings between patients and health providers. But many doctors are watching warily. “I'd estimate that the majority of patient consultations in the United States are now happening virtually”, says Ray Dorsey, director of the Center for Health and Technology at the University of Rochester Medical Center (Rochester, NY, USA). “There has been something like a ten-fold increase in the last couple of weeks. It's as big a transformation as any ever before in the history of US health care. But the real question is whether these measures will stay in place after the pandemic subsides?” In shifting towards virtualised care in response to COVID-19, health-care planners worldwide are drawing from China's experiences. In China, patients were advised to seek physicians' help online rather than in person after the pandemic first emerged in Wuhan in December, says Yanwu Xu, principal health architect for Baidu Health, one of China's largest internet corporations, and one of three companies contracted by the Chinese Government to implement virtual care technologies. © 2020 TPG/Getty Images 2020 Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active. Speaking to The Lancet from Beijing, Xu, who is a member of WHO's Digital Health Technical Advisory Group, and a researcher at the Chinese Academy of Sciences' Ningbo Institute of Materials Technology & Engineering, explained that China's virtual care transformation was unleashed when the country's national health insurance agency agreed to pay for virtual care consultations because the hospitals and clinics were full. “For the first time, Chinese physicians have really embraced virtual care”, says Xu. “Thanks to these technologies physicians can consult with upwards of a hundred patients a day, which is a very significant increase in the daily caseloads they handled in person in the past.” Following China's example, on March 30, at the direction of US President Donald Trump, the Centers for Medicare & Medicaid Services (CMS), which oversees the nation's major public health programmes, issued what it termed “an unprecedented array of temporary regulatory waivers and new rules to equip the American healthcare system with maximum flexibility to respond to the 2019 Novel Coronavirus (COVID-19) pandemic”. In a press release, the CMS explained that its new measures will allow for more than 80 additional services to be furnished via telehealth. “During the public health emergencies, individuals can use interactive apps with audio and video capabilities to visit with their clinician for an even broader range of services. Providers also can evaluate beneficiaries who have audio phones only. These temporary changes will ensure that patients have access to physicians and other providers while remaining safely at home.” Eric Topol, director of the Scripps Research Translational Institute in La Jolla (CA, USA), praises these efforts, but laments that they have been so long coming. “This is a very big moment for virtual health care. But, of course, there isn't a lot of readiness. There are so many ways to monitor people's health that we aren't doing at any scale, in large part due to interstate regulatory barriers that have meant we are in no way ready for this moment.” Similar steps to sweep aside regulatory and hegemonic professional barriers are being taken in Canada, according to Sandy Buchman, president of the Canadian Medical Association. “As we confront [COVID-19], we're racing to implement virtual health-care technologies as quickly as we can. The scale and pace of change is unprecedented for Canadian health care.” Topol warns that the sudden rush to virtualisation risks diminishing the quality of clinical care. “It's inexpensive and expedient, but it'll never be the same as a physical examination with all of its human qualities of judgment and communication. But with COVID, this is a trade-off we have to accept.” Similar developments are sweeping health care in the UK, says Trisha Greenhalgh, co-director of the Interdisciplinary Research In Health Sciences Unit at Oxford University (Oxford, UK). “We have a research project that has been tracking the use of video conferencing in Scotland over the past 6 months, and in the space of the last 2 weeks we've seen [a] 1000% increase in use”, said Greenhalgh. “It's incredible. [COVID-19] has done what we couldn't do until now, because, suddenly, it's not just the patient who might die—now it's the doctor who might die. So the doctors are highly motivated. The risk–benefit ratio for virtual health care has massively shifted and all the red tape has suddenly been cut.” In Italy, although all 20 regions had implemented national telemedicine guidelines as of 2018, hospital managers have been largely caught off guard by the explosion in digital demand, says Elena Sini, information officer for GVM Care & Research, a network of nine private hospitals in northern Italy. Many Italian hospitals lack the necessary hardware and technical resources, she noted in a March 23 webinar. “Burnout is also a concern for IT staff, so set up some psychological support for IT staff”, she advises. Sini reported a lack of hardware due to broken supply chains and insufficient bandwidth capacities as the demand increased by about 90% on fixed landlines and 40% on mobile networks in Italy. “We have to ramp up telemedicine capabilities, but for most hospitals in Italy this is an issue. We just don't have the capabilities to deliver.” Speaking alongside Sini, Henning Schneider, chief information officer for Asklepios Kliniken, one of Germany's largest private hospital networks, said the COVID-19 pandemic is highlighting a need for intensified IT collaboration between German hospitals. In New Delhi, India, Anurag Agrawal, director of the Council of Scientific and Industrial Research's Institute of Genomics and Integrative Biology, says Indian health-care providers have become similarly preoccupied with virtual health care while the country is in near-total lockdown. “Suddenly, after years of resistance to virtual health care, our physicians keenly want it”, said Agrawal. “[COVID-19] is breaching the barriers to virtual health care faster than anything in history.” Access to virtual health care is far easier within India's publicly financed health-care systems than among private providers, Agrawal notes. However, as India's response to COVID-19 escalates, many private physicians are providing virtual consultations for free. “That could change if the lockdown runs longer”, Agrawal explains. “Meanwhile, the national and state governments will need some time to ramp this up, and the lockdown is buying us time.” To expedite the transformation, he adds, the Indian Government is copying China's tactics by releasing a set of newly developed applications that use instant messaging platforms, such as WhatsApp, to enable a suite of virtual health-care services, including public messaging about behavioural modifications, epidemiological tracing, and access to virtual health-care providers. “The Chinese had a national advantage with their WeChat messaging platform, which is better-suited to hosting virtual health-care apps than WhatsApp is.” Like Topol, Agrawal warns that virtual health care comes with a trade-off in the quality of patient care. “Physicians, too, we should keep in mind, benefit from the in-person consultations as much as patients”, he suggests. “We may mourn that.” African health-care providers have yet to join the global rush en masse, observes Chris Seebregts, chief executive of Jembi Health Systems, a Cape Town-based non-governmental organisation that advises health-system strategists in digital technologies in Cameroon, Ethiopia, Kenya, Malawi, Mozambique, South Africa, South Sudan, and Uganda. “Digital health technologies are being adopted at a huge rate now here in South Africa in response to [COVID-19]”, Seebregts said via video conference from Cape Town, “but we're not seeing much adoption yet elsewhere in Africa. [COVID-19] may accelerate it, but it's too soon to say.” With mobile phone use now globally ubiquitous, technological barriers to the adoption of virtual health care are easily surmountable, even in the most resource-scarce settings, notes Alex Jadad, founder of the Centre for Global eHealth Innovation at the University of Toronto, ON, Canada, where he is the director of the Institute for Global Health Equity and Innovation. “Whether I'm deep in Malawi or deep in the Amazon, all I need is a mobile phone and a connection that allows me to talk to a clinician. That's all it takes for a clinical encounter. These are god-like tools for medicine. There's no need for us to wait for any more sophisticated infrastructure than that”, says Jadad, who is advising on virtual health-care adoption strategies for health groups in Colombia. “The regulatory barriers that have held virtual health care back for all these decades were never justifiable”, Jadad avers. “[COVID-19] is an opportunity to blow all these barriers away. And the question now is ‘how far are we willing to go?’” © 2020 Catherine Lai/AFP/Getty Images 2020 Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.
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              Barriers and Facilitators That Influence Telemedicine-Based, Real-Time, Online Consultation at Patients’ Homes: Systematic Literature Review

              Background Health care providers are adopting information and communication technologies (ICTs) to enhance their services. Telemedicine is one of the services that rely heavily on ICTs to enable remote patients to communicate with health care professionals; in this case, the patient communicates with the health care professional for a follow-up or for a consultation about his or her health condition. This communication process is referred to as an e-consultation. In this paper, telemedicine services refer to health care services that use ICTs, which enable patients to share, transfer, and communicate data or information in real time (ie, synchronous) from their home with a care provider—normally a physician—at a clinical site. However, the use of e-consultation services can be positively or negatively influenced by external or internal factors. External factors refer to the environment surrounding the system as well as the system itself, while internal factors refer to user behavior and motivation. Objective This review aims to investigate the barriers and the facilitators that influence the use of home consultation systems in the health care context. This review also aims to identify the effectiveness of Home Online Health Consultation (HOHC) systems in improving patients’ health as well as their satisfaction with the systems. Methods We conducted a systematic literature review to search for articles—empirical studies—about online health consultation in four digital libraries: Scopus, Association for Computing Machinery, PubMed, and Web of Science. The database search yielded 2518 articles; after applying the inclusion and exclusion criteria, the number of included articles for the final review was 45. A qualitative content analysis was performed to identify barriers and facilitators to HOHC systems, their effectiveness, and patients’ satisfaction with them. Results The systematic literature review identified several external and internal facilitators and barriers to HOHC systems that were used in the creation of a HOHC framework. The framework consists of four requirements; the framework also consists of 17 facilitators and eight barriers, which were further categorized as internal and external influencers on HOHC. Conclusions Patients from different age groups and with different health conditions benefited from remote health services. HOHC via video conferencing was effective in delivering online treatment and was well-accepted by patients, as it simulated in-person, face-to-face consultation. Acceptance by patients increased as a result of online consultation facilitators that promoted effective and convenient remote treatment. However, some patients preferred face-to-face consultation and showed resistance to online consultation. Resistance to online consultation was influenced by some of the identified barriers. Overall, the framework identified the facilitators and barriers that positively and negatively influenced the uptake of HOHC systems, respectively.
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                Author and article information

                Contributors
                Journal
                J Med Internet Res
                J Med Internet Res
                JMIR
                Journal of Medical Internet Research
                JMIR Publications (Toronto, Canada )
                1439-4456
                1438-8871
                October 2020
                5 October 2020
                : 22
                : 10
                : e20406
                Affiliations
                [1 ] Faculty Health & Life Sciences Centre for Intelligent Healthcare Coventry University Coventry United Kingdom
                [2 ] Health & Life Sciences Centre for Intelligent Healthcare Coventry University Coventry United Kingdom
                [3 ] Queen Victoria Hospital NHS Foundation Trust East Grinstead, West Sussex United Kingdom
                [4 ] Facial Palsy UK (Charity) Peterborough United Kingdom
                [5 ] Department of Economics, Institute of Business Administration (IBA) Karachi Pakistan
                [6 ] Exercise & Life Sciences, Faculty Health & Life Sciences Centre for Sport Coventry University Coventry United Kingdom
                Author notes
                Corresponding Author: Ala Szczepura ab5794@ 123456coventry.ac.uk
                Author information
                https://orcid.org/0000-0001-6244-9872
                https://orcid.org/0000-0001-7837-3817
                https://orcid.org/0000-0003-3969-5324
                https://orcid.org/0000-0001-7646-4221
                https://orcid.org/0000-0003-3340-3036
                https://orcid.org/0000-0003-2085-8277
                https://orcid.org/0000-0003-1315-0502
                Article
                v22i10e20406
                10.2196/20406
                7573702
                32763890
                777f05fb-cb5c-41c7-9366-ab04e20c7e87
                ©Ala Szczepura, Nikki Holliday, Catriona Neville, Karen Johnson, Amir Jahan Khan Khan, Samuel W Oxford, Charles Nduka. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 05.10.2020.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

                History
                : 18 May 2020
                : 12 June 2020
                : 18 June 2020
                : 25 June 2020
                Categories
                Original Paper
                Original Paper

                Medicine
                bell palsy,facial nerve paralysis,patient experience,treatment pathway,facial exercise therapy,neuromuscular retraining,treatment adherence,digital technology,outcome measures,telerehabilitation,biosensors,covid-19

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