Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review.

BACKGROUND: International advances in information communication, eHealth, and other digital health technologies have led to significant expansions in the collection and analysis of personal health data. However, following a series of high-profile data sharing scandals and the emergence of COVID-19, critical exploration of public willingness to share personal health data remains limited, particularly for third-party or secondary uses. OBJECTIVE: This systematic review aims to explore factors that affect public willingness to share personal health data for third-party or secondary uses. METHODS: A systematic search of 6 databases (MEDLINE, Embase, PsycINFO, CINAHL, Scopus, and SocINDEX) was conducted with review findings analyzed using inductive-thematic analysis and synthesized using a narrative approach. RESULTS: Of the 13,949 papers identified, 135 were included. Factors most commonly identified as a barrier to data sharing from a public perspective included data privacy, security, and management concerns. Other factors found to influence willingness to share personal health data included the type of data being collected (ie, perceived sensitivity); the type of user requesting their data to be shared, including their perceived motivation, profit prioritization, and ability to directly impact patient care; trust in the data user, as well as in associated processes, often established through individual choice and control over what data are shared with whom, when, and for how long, supported by appropriate models of dynamic consent; the presence of a feedback loop; and clearly articulated benefits or issue relevance including valued incentivization and compensation at both an individual and collective or societal level. CONCLUSIONS: There is general, yet conditional public support for sharing personal health data for third-party or secondary use. Clarity, transparency, and individual control over who has access to what data, when, and for how long are widely regarded as essential prerequisites for public data sharing support. Individual levels of control and choice need to operate within the auspices of assured data privacy and security processes, underpinned by dynamic and responsive models of consent that prioritize individual or collective benefits over and above commercial gain. Failure to understand, design, and refine data sharing approaches in response to changeable patient preferences will only jeopardize the tangible benefits of data sharing practices being fully realized.

Telehealth competencies for allied health professionals: A scoping review.

INTRODUCTION: Telehealth has become one of the main methods of delivering allied health professional services world-wide, yet many professionals do not have sufficient training to deliver high-quality telehealth services. This review aims to identify what competencies allied health professionals require for effective telehealth service delivery. METHODS: This scoping review used the Population Concept Context framework and searched the following databases: MEDLINE, CINAHL, PsychInfo, Cochrane, EMBASE, Web of Science, PEDro, United Kingdom Health Forum, WHO, Health Education England, and all UK and Australian AHP professional bodies. RESULTS: A total of 37 articles were included out of 92,525 identified by the literature search. Competencies were related to two areas: (1) delivery of the telehealth consultation and (2) service management of telehealth consultations. The first area included the following competency themes: clinical reasoning, communication, effectively using technology, person-centred care, practice-based assessment and intervention knowledge/behaviour/skills, privacy, security, and patient safety, professionalism, and setting up the technical environment. The second area included the following competency themes: digital infrastructure, informing practice, and management. Although findings emphasised the importance of telehealth competencies, none have been implemented within education. One-third of the articles were from the discipline of psychology. CONCLUSION: This is the first scoping review to combine telehealth competencies reported across allied health disciplines. Although there were a vast range of competencies, they need implementation into teaching and learning to be practically useful. Most competencies were from psychology, but potentially applicable for other allied health professionals. A shared and adaptable standard for telehealth competencies would be useful to ensure high-quality practice across all allied health professionals.

Telerehabilitation for people with physical disabilities and movement impairment: development and evaluation of an online toolkit for practitioners and patients.

PURPOSE: Telerehabilitation has increasingly been used since the COVID-19 pandemic but with limited guidance available on undertaking physical assessments using remote methods. We aimed to provide such guidance by developing a Telerehab Toolkit, an online information and training resource for practitioners, patients, and carers on telerehabilitation for people with physical disabilities and movement impairment. MATERIALS AND METHODS: Development and evaluation of the toolkit were informed by the Knowledge to Action framework and took place iteratively in two phases-knowledge creation and action. Information was collated from various sources including literature review, online survey, service evaluation, and focus group discussions. The toolkit has been evaluated using think-aloud interviews, e-mail and social media feedback from users, and analytics data on user engagement with the website. RESULTS: The Telerehab Toolkit focuses on remote physical assessments, and contains information on technology, digital skills, remote assessment tools, information governance, and safety for telerehabilitation. Resources include top tips from practitioners and patients, how-to guides, checklists, videos, and links to evidence. CONCLUSIONS: The Telerehab Toolkit has been well-received by practitioners, healthcare students, patients, and carers, is being disseminated widely, and is freely available (www.plymouth.ac.uk/research/telerehab). IMPLICATIONS FOR REHABILITATIONTelerehabilitation has been increasingly used since the COVID-19 pandemic, but with limited guidance and training for practitioners on undertaking safe and effective remote physical assessments.The Telerehab Toolkit has been developed iteratively using the Knowledge to Action framework; it is a free online resource for practitioners and patients with specific guidance on telerehabilitation for physical disabilities and movement impairment.It is anticipated that the resource will help to improve the knowledge, skills, and confidence of the current and future rehabilitation workforce.

The application, character, and effectiveness of person-centred care with service-users, and the community within the discipline of podiatry: a scoping review.

BACKGROUND: The concept of person-centred care is embedded within healthcare policy, focusing on long-term conditions and multimorbidity. The evidence that person-centred care is being operationalised effectively across all areas of healthcare is limited. The aim of this scoping review was to explore the application, features, and effectiveness of person-centred care with service-users, carers, and the community within podiatry. METHODS: The scoping review was based upon Arksey and Malley's five stage framework. The following databases were searched between January 2010 and March 2021: AMED, CINAHL, Embase, Cochrane library, SocINDEX, British Education Index, Business Source Complete, MEDLINE (EBSCO), and the EThOS 'Global electronic thesis and dissertation' repository, Prospero, and reference lists of included papers. Primary research articles were included if they reported on a person-centred care focused intervention with podiatry. Research terms were developed, appropriate databases identified, and an initial search resulted in 622 papers which, following removal of duplicates and critical appraisal, resulted in 18 eligible papers. Data extracted involved the types of person-centred care utilised, intervention details, motivations for engaging in person-centred care interventions, and intervention barriers and challenges. RESULTS: Eighteen articles were included in the review. The main type of person-centred care utilised was patient/carer activities around self-management. None of the studies considered the role of the podiatrist as a person-centred care agent. The data on interventions generated the following themes 'service facilitated person-centred care' where a change has been made to service delivery, 'direct clinician delivery' where the intervention is delivered by the clinician with the patient present and 'patient instigated participation' where patient motivation is required to engage with an activity beyond the consultation. Outcome measures associated with quality of care and effectiveness were absent. CONCLUSION: There is a lack of congruency between the concept of person-centred care and how it is operationalised. A whole system approach that considers commissioning, organisational leadership, the role of the practitioners and patients has not been considered. There is immense scope for the podiatrist to play an important part in the personalised-care agenda, but currently research that can evidence the effectiveness of person-centred care in podiatry is absent. REVIEW REGISTRATION: Open Science Framework ( osf.io/egjsd ).

The importance of self-efficacy and negative affect for neurofeedback success for central neuropathic pain after a spinal cord injury.

EEG-based neurofeedback uses mental behaviours (MB) to enable voluntary self-modulation of brain activity, and has potential to relieve central neuropathic pain (CNP) after a spinal cord injury (SCI). This study aimed to understand neurofeedback learning and the relationship between MB and neurofeedback success. Twenty-five non-CNP participants and ten CNP participants received neurofeedback training (reinforcing 9-12 Hz; suppressing 4-8 Hz and 20-30 Hz) on four visits. Participants were interviewed about the MB they used after each visit. Questionnaires examined the following factors: self-efficacy, locus of control, motivation, and workload of neurofeedback. MB were grouped into mental strategies (a goal-directed mental action) and affect (emotional experience during neurofeedback). Successful non-CNP participants significantly used more imagination-related MS and reported more negative affect compared to successful CNP participants. However, no mental strategy was clearly associated with neurofeedback success. There was some association between the lack of success and negative affect. Self-efficacy was moderately correlated with neurofeedback success (r = < 0.587, p = < 0.020), whereas locus of control, motivation, and workload had low, non-significant correlations (r < 0.300, p > 0.05). Affect may be more important than mental strategies for a successful neurofeedback performance. Self-efficacy was associated with neurofeedback success, suggesting that increasing confidence in one's neurofeedback abilities may improve neurofeedback performance.

Patient-to-Patient Interactions During the Pain Management Programme: The Role of Humor and Venting in Building a Socially Supportive Community.

Objectives: Social support is most positively perceived when there is an optimal match between a patient's need for communication and the purpose of their interaction. Maladaptive communication patterns may inhibit social bonding or mutual support, negatively impacting clinical outcomes. This study aimed to identify how people with chronic pain naturalistically converse together about their pain in the context of a Pain Management Programme (PMP). Methods: Seven participants (4 females; 3 males) with ongoing chronic pain who were attending a PMP in a regional hospital in the United Kingdom were audio/video recorded during breaks in their PMP. Interactions were transcribed using Jeffersonian Transcription and analyzed using Conversation Analysis. Results: Two conversational mechanisms were identified: (1) Conversational humor; and (2) A venting cycle. Participants used their pain-related experiences construct a motive for a joke, then proceeded to deliver the joke, which initiated a joke return from observers. The sequence was completed by a collaborative punchline. In the venting cycle, an initial complaint was escalated by the sharing of comparable experiences, after which the vent was concluded through a joke punchline, acting as a pivot to move the conversation forwards, terminating the venting. Conclusions: Humorous interpersonal interactions about chronic pain provided a forum for social support-building within the PMP. Humor was affiliative and built social collaboration, helping individuals to together make sense of their pain in a prosocial atmosphere, approaching pain-related experiences with levity. Patient-to-patient interactions within the PMP were strongly prosocial and inclusive, potentially facilitating enhanced PMP clinical outcomes through collaboration.

Telerehabilitation for physical disabilities and movement impairment: A service evaluation in South West England.

RATIONALE, AIMS AND OBJECTIVES: Telerehabilitation was used to ensure continued provision of care during the COVID-19 pandemic, but there was a lack of guidance on how to use it safely and effectively for people with physical disabilities and movement impairment. In this service evaluation, we aimed to collate information on practitioner and patient experiences, challenges and facilitators, and examples of best practice to inform the development of an online toolkit and training package. METHODS: Guided discussions were carried out with 44 practitioners, 7 patients and 2 carers from five health and social care organisations in South West England, and analysed thematically. RESULTS: Practitioners and patients had positive experiences of telerehabilitation and were optimistic about its future use. Recognized benefits for people with physical disabilities included greater flexibility, reduced travel and fatigue, having appointments in a familiar environment and ease of involving family members. Challenges encountered were: technological (usability issues, access to technology and digital skills); difficulties seeing or hearing patients; the lack of 'hands-on' care; and safety concerns. Facilitators were supported by colleagues or digital champions, and family members or carers who could assist patients during their appointments. Key themes in best practice were: person-centred and tailored care; clear and open communication and observation and preparation and planning. Practitioners shared tips for remote physical assessments; for example, making use of patient-reported outcomes, and asking patients to wear bright and contrasting coloured clothing to make it easier to see movement. CONCLUSION: Telerehabilitation holds promise in health and social care, but it is necessary to share good practice to ensure it is safe, effective and accessible. We collated information and recommendations that informed the content of the Telerehab Toolkit (https://www.plymouth.ac.uk/research/telerehab), a practical resource for practitioners, patients and carers, with a focus on remote assessment and management of physical disabilities and movement impairment.

How do we engage people in testing for COVID-19? A rapid qualitative evaluation of a testing programme in schools, GP surgeries and a university.

BACKGROUND: The UK Scientific Advisory Group for Emergencies (SAGE) emphasises the need for high levels of engagement with communities and individuals to ensure the effectiveness of any COVID-19 testing programme. A novel pilot health surveillance programme to assess the feasibility of weekly community RT-LAMP (Reverse transcription loop-mediated isothermal amplification) testing for the SARS-CoV-2 virus using saliva samples collected at home was developed and piloted by the University of Southampton and Southampton City Council. METHODS: Rapid qualitative evaluation was conducted to explore experiences of those who took part in the programme, of those who declined and of those in the educational and healthcare organisations involved in the pilot testing who were responsible for roll-out. This included 77 interviews and 20 focus groups with 223 staff, students, pupils and household members from four schools, one university, and one community healthcare NHS trust. The insights generated and informed the design and modification of the Southampton COVID-19 Saliva Testing Programme and the next phase of community-testing. RESULTS: Discussions revealed that high levels of communication, trust and convenience were necessary to ensure people's engagement with the programme. Participants felt reassured by and pride in taking part in this novel programme. They suggested modifications to reduce the programme's environmental impact and overcome cultural barriers to participation. CONCLUSIONS: Participants' and stakeholders' motivations, challenges and concerns need to be understood and these insights used to modify the programme in a continuous, real-time process to ensure and sustain engagement with testing over the extended period necessary. Community leaders and stakeholder organisations should be involved throughout programme development and implementation to optimise engagement.

Telerehabilitation for People With Physical Disabilities and Movement Impairment: A Survey of United Kingdom Practitioners.

BACKGROUND: Telerehabilitation is a feasible and potentially effective alternative to face-to-face rehabilitation. However, specific guidance, training, and support for practitioners who undertake remote assessments in people with physical disabilities and movement impairment are limited. OBJECTIVE: The aims of this survey of United Kingdom-based health and social care practitioners were to explore experiences, assess training needs, and collate ideas on best practices in telerehabilitation for physical disabilities and movement impairment. The aim will be to use the findings to inform a practical tool kit and training package for telerehabilitation use. METHODS: UK rehabilitation practitioners were invited to complete an online questionnaire from November to December 2020. Opportunity and snowball sampling were used to recruit participants from professional and educational networks, special interest groups, and via social media. Closed questionnaire items were analyzed using descriptive statistics. Qualitative inductive analysis using NVivo was used for open responses. RESULTS: There were 247 respondents, of which 177 (72%) were physiotherapists and occupational therapists. Most (n=207, 84%) had used video-based consultations (typically supported by telephone and email), and the use of this method had increased in frequency since the COVID-19 pandemic. Practitioners perceived telerehabilitation positively overall and recognized benefits for patients including a reduced infection risk, convenience and flexibility, and reduced travel and fatigue. Common obstacles were technology related (eg, internet connection), practical (eg, difficulty positioning the camera), patient related (eg, health status), practitioner related (eg, lack of technical skills), and organizational (eg, lack of access to technology). Support from family members or carers was a major facilitator for successful remote consultations. Of the 207 respondents who had used video-based consultations, 103 (50%) had assessed physical impairments using this method, 107 (52%) had assessed physical function, and 121 (59%) had used patient-reported outcome measures. Although practitioners generally felt confident in delivering video-based consultations, they felt less proficient in undertaking remote physical assessments, expressing concerns about validity, reliability, and safety. Only 46 of the 247 (19%) respondents had received any training in telerehabilitation or video consultations, and some felt they were "feeling their way in the dark." Practitioners desired training and guidance on physical assessment tools suitable for remote use, when to use video-based consultations or alternative methods, governance issues, digital platforms, and signposting to digital skills training for themselves and their patients. CONCLUSIONS: In response to the COVID-19 pandemic, practitioners rapidly adopted telerehabilitation for people with physical disabilities and movement impairment. However, there are technical, practical, and organizational obstacles to overcome, and a clear need for improved guidance and training in remote physical assessments. The findings of this survey will inform the development of a tool kit of resources and a training package for the current and future workforce in telerehabilitation.

A Systematic Review of Neurofeedback for the Management of Motor Symptoms in Parkinson's Disease.

BACKGROUND: Neurofeedback has been proposed as a treatment for Parkinson's disease (PD) motor symptoms by changing the neural network activity directly linked with movement. However, the effectiveness of neurofeedback as a treatment for PD motor symptoms is unclear. AIM: To systematically review the literature to identify the effects of neurofeedback in people with idiopathic PD; as defined by measurement of brain activity; motor function; and performance. DESIGN: A systematic review. Included Sources and Articles: PubMed; MEDLINE; Cinhal; PsychoInfo; Prospero; Cochrane; ClinicalTrials.gov; EMBASE; Web of Science; PEDro; OpenGrey; Conference Paper Index; Google Scholar; and eThos; searched using the Population-Intervention-Comparison-Outcome (PICO) framework. Primary studies with the following designs were included: randomized controlled trials (RCTs), non-RCTs; quasi-experimental; pre/post studies; and case studies. RESULTS: This review included 11 studies out of 6197 studies that were identified from the literature search. Neuroimaging methods used were fMRI; scalp EEG; surface brain EEG; and deep brain EEG; where 10-15 Hz and the supplementary motor area were the most commonly targeted signatures for EEG and fMRI, respectively. Success rates for changing one's brain activity ranged from 47% to 100%; however, both sample sizes and success criteria differed considerably between studies. While six studies included a clinical outcome; a lack of consistent assessments prevented a reliable conclusion on neurofeedback's effectiveness. Narratively, fMRI neurofeedback has the greatest potential to improve PD motor symptoms. Two main limitations were found in the studies that contributed to the lack of a confident conclusion: (1) insufficient clinical information and perspectives (e.g., no reporting of adverse events), and (2) limitations in numerical data reporting (e.g., lack of explicit statistics) that prevented a meta-analysis. CONCLUSIONS: While fMRI neurofeedback was narratively the most effective treatment; the omission of clinical outcome measures in studies using other neurofeedback approaches limits comparison. Therefore, no single neurofeedback type can currently be identified as an optimal treatment for PD motor symptoms. This systematic review highlights the need to improve the inclusion of clinical information and more robust reporting of numerical data in future work. Neurofeedback appears to hold great potential as a treatment for PD motor symptoms. However, this field is still in its infancy and needs high quality RCTs to establish its effectiveness. Review Registration: PROSPERO (ID: CRD42020191097).

Scope, context and quality of telerehabilitation guidelines for physical disabilities: a scoping review.

OBJECTIVE: To identify the available guidance and training to implement telerehabilitation movement assessments for people (adults and children) with a physical disability, including those recovering from COVID-19. DESIGN: Rapid scoping review. INCLUDED SOURCES AND ARTICLES: PubMed, CINAHL, PsychInfo, Cochrane, Embase, Web of Science, PEDro, UK Health Forum, WHO, National Archives and NHS England were searched using the participant-concept-context framework from 2015 to August 2020. Primary studies that recruited individuals with physical disabilities and guidance documents aimed at providers to implement movement-related telerehabilitation were included. RESULTS: 23 articles (11 primary research studies, 3 systematic reviews and 9 guidance documents) were included out of 7857 that were identified from the literature search. Two main issues were found: (1) telerehabilitation guidance (from both research studies and guidance documents) was not specific to movement-related assessment and (2) most primary research studies provided neither guidance nor training of movement-specific assessment to practitioners. Of the COVID-19 related guidance, two articles reported COVID-19 management that only referred to identifying COVID-19 status without references to specific movement-related guidance. CONCLUSIONS: Telerehabilitation guidance and training have existed pre-COVID-19, yet the lack of specific movement-related information and provider support is surprising. This gap must be addressed to optimise effective implementation of remote assessments for those with physical disabilities. REVIEW REGISTRATION: Open Science Framework: osf.io/vm6sp.

Technologies to Support Assessment of Movement During Video Consultations: Exploratory Study.

BACKGROUND: Understanding and assessing patients' body movements is essential for physical rehabilitation but is challenging in video consultations, as clinicians are frequently unable to see the whole patient or observe the patient as they perform specific movements. OBJECTIVE: The objective of this exploratory study was to assess the use of readily available technologies that would enable remote assessment of patient movement as part of a video consultation. METHODS: We reviewed the literature and available technologies and chose four technologies (Kubi and Pivo desktop robots, Facebook Portal TV, wide-angle webcam), in addition to help from a friend or a simple mobile phone holder, to assist video consultations. We used 5 standard assessments (sit-to-stand, timed "Up & Go," Berg Balance Test, ankle range of motion, shoulder range of motion) as the "challenge" for the technology. We developed an evaluation framework of 6 items: efficacy, cost, delivery, patient setup, clinician training and guidance, and safety. The coauthors, including 10 physiotherapists, then took the roles of clinician and patient to explore 7 combinations of 5 technologies. Subsequently, we applied our findings to hypothetical patients based on the researchers' family members and clinical experience. RESULTS: Kubi, which allowed the clinician to remotely control the patient's device, was useful for repositioning the tablet camera to gain a better view of the patient's body parts but not for tracking movement. Facebook Portal TV was useful, but only for upper body movement, as it functions based on face tracking. Both Pivo, with automated full body tracking using a mobile phone, and the wide-angle webcam for a laptop or desktop computer show promise. Simple solutions such as having a friend operate a mobile phone and use of a mobile phone holder also have potential. The setup of these technologies will require better instructions than are currently available from suppliers, and successful use will depend on the technology readiness of patients and, to some degree, of clinicians. CONCLUSIONS: Technologies that may enable clinicians to assess movement remotely as part of video consultations depend on the interplay of technology readiness, the patient's clinical conditions, and social support. The most promising off-the-shelf approaches seem to be use of wide-angle webcams, Pivo, help from a friend, or a simple mobile phone holder. Collaborative work between patients and clinicians is needed to develop and trial technological solutions to support video consultations assessing movement.

Coping strategies, vision-related quality of life, and emotional health in managing retinitis pigmentosa: a survey study.

BACKGROUND: Retinitis pigmentosa is a group of genetic progressive retinal dystrophies that may adversely affect daily life. Those with RP should develop adaptive coping strategies to manage their condition. This study investigates the relationship between engaging (ECS) and disengaging coping strategies (DCS), vision-related quality of life (VRQoL), and emotional health, in adults living at home with retinitis pigmentosa. METHOD: One hundred and five participants (70 female; meanage of 46.98, SD age = 13.77) completed a cross-sectional survey. The questionnaire booklet consisted of the Coping Strategies Inventory - Short Form (32 items), the National Eye Institute Visual Functioning Questionnaire 25 (25 items), Marylands Trait Depression Scale (18 items), the Warwick-Edinburgh Mental Well-being Scale (14 items), and the Subjective Happiness Scale (4 items). RESULTS: Data was analysed with a two-block hierarchical multiple regression, with the first block controlling for the demographic data (age, sex, years since retinitis pigmentosa diagnosis, number of comorbidities, participant-perceived retinitis pigmentosa severity, and knowing RP type) and the second block consisting of primary measures (type of coping strategy, VRQoL, and Emotional Health). Type of coping strategy was found to impact psychosocial variables of VRQoL, not overall VRQoL. These psychosocial VRQoL variables had a positive association with ECS and a negative association with DCS. Emotional Health increased with ECS and decreased with DCS. There was a larger impact of DCS on VRQoL and Emotional Health compared to ECS, that is, VRQoL and Emotional Health decreased more with increasing DCS than VRQoL, and Emotional Health increased with increasing ECS. CONCLUSION: In concordance with previous research, ECS increased with increasing VRQoL and DCS decreased with increasing VRQoL. However, the findings also indicated that DCS had a greater impact than ECS on VRQoL and Emotional Health. This suggests that diminishing DCS should be prioritised over developing ECS to positively influence VRQoL and Emotional Health. Further research should investigate the impact of reducing DCS compared to increasing ECS, and how this may influence VRQoL and Emotional Health.