How to make study documents clear and relevant : the impact of patient involvement

Background Patient and public involvement can improve study outcomes, but little data have been collected on why this might be. We investigated the impact of the Feasibility and Support to Timely Recruitment for Research (FAST-R) service, made up of trained patients and carers who review research documents at the beginning of the research pipeline. Aims To investigate the impact of the FAST-R service, and to provide researchers with guidelines to improve study documents. Method A mixed-methods design assessing changes and suggestions in documents submitted to the FAST-R service from 2011 to 2020. Quantitative measures were readability, word count, jargon words before and after review, the effects over time and if changes were implemented. We also asked eight reviewers to blindly select a pre- or post-review participant information sheet as their preferred version. Reviewers’ comments were analysed qualitatively via thematic analysis. Results After review, documents were longer and contained less jargon, but did not improve readability. Jargon and the number of suggested changes increased over time. Participant information sheets had the most suggested changes. Reviewers wanted clarity, better presentation and felt that documents lacked key information such as remuneration, risks involved and data management. Six out of eight reviewers preferred the post-review participant information sheet. FAST-R reviewers provided jargon words and phrases with alternatives for researchers to use. Conclusions Longer documents are acceptable if they are clear, with jargon explained or substituted. The highlighted barriers to true informed consent are not decreasing, although this study has suggestions for improving research document accessibility

Terms and conditions apply : critical issues for readability and jargon in mental health depression apps

Background Mental health services are turning to technology to ease the resource burden, but privacy policies are hard to understand potentially compromising consent for people with mental health problems. The FDA recommends a reading grade of 8. Objective To investigate and improve the accessibility and acceptability of mental health depression app privacy policies. Methods A mixed methods study using quantitative and qualitative data to improve the accessibility of app privacy policies. Service users completed assessments and focus groups to provide information on ways to improve privacy policy accessibility, including identifying and rewording jargon. This was supplemented by comparisons of mental health depression apps with social media, music and finance apps using readability analyses and examining whether GDPR affected accessibility. Results Service users provided a detailed framework for increasing accessibility that emphasised having critical information for consent. Quantitatively, most app privacy policies were too long and complicated for ensuring informed consent (mental health apps mean reading grade = 13.1 (SD = 2.44)). Their reading grades were no different to those for other services. Only 3 mental health apps had a grade 8 or less and 99% contained service user identified jargon. Mental health app privacy policies produced for GDPR weren't more readable and were longer. Conclusions Apps specifically aimed at people with mental health difficulties are not accessible and even those that fulfilled the FDA's recommendation for reading grade contained jargon words. Developers and designers can increase accessibility by following a few rules and should, before launching, check whether the privacy policy can be understood

Keeping well in a COVID-19 crisis : a qualitative study formulating the perspectives of mental health service users and carers

Background People with existing mental health conditions may be particularly vulnerable to the psychological effect of the COVID-19 pandemic. But their positive and negative appraisals, and coping behaviour could prevent or ameliorate future problems. Objective To explore the emotional experiences, thought processes and coping behaviours of people with existing mental health problems and carers living through the pandemic. Methods UK participants who identified as a mental health service user (N18), a carer (N5) or both (N8) participated in 30-minute semi-structured remote interviews (31 March 2020 to 9 April 2020). The interviews investigated the effects of social distancing and self-isolation on mental health and the ways in which people were coping. Data were analysed using a framework analysis. Three service user researchers charted data into a framework matrix (consisting of three broad categories: “emotional responses”, “thoughts” and “behaviours”) and then used an inductive process to capture other contextual themes. Results Common emotional responses were fear, sadness and anger but despite negative emotions and uncertainty appraisals, participants described efforts to cope and maintain their mental wellbeing. This emphasised an increased reliance on technology, which enabled social contact and occupational or leisure activities. Participants also spoke about the importance of continued and adapted mental health service provision, and the advantages and disadvantages associated with changes in their living environment, life schedule and social interactions. Conclusion This study builds on a growing number of qualitative accounts of how mental health service users and carers experienced and coped with extreme social distancing measures early in the COVID-19 pandemic. Rather than a state of helplessness this study contains a clear message of resourcefulness and resilience in the context of fear and uncertainty

Factors Influencing Increased Use of Technology to Communicate With Others During the COVID-19 Pandemic: Cross-sectional Web-Based Survey Study

BackgroundCommunication via technology is regarded as an effective way of maintaining social connection and helping individuals to cope with the psychological impact of social distancing measures during a pandemic. However, there is little information about which factors have influenced increased use of technology to communicate with others during lockdowns and whether this has changed over time. ObjectiveThe aim of this study is to explore which psychosocial factors (eg, mental health and employment) and pandemic-related factors (eg, shielding and time) influenced an increase in communication via technology during the first lockdown in the United Kingdom. MethodsA cross-sectional, web-based survey was conducted between April and July 2020, examining thoughts, feelings, and behaviors associated with the pandemic, including communicating more using technology (eg, via messaging, phone, or video). We collected sociodemographic information, employment status, mental health service user status, and depression symptoms. We used hierarchical logistic regression to test which factors were associated with communicating more using technology during the lockdown. ResultsParticipants (N=1464) were on average 41.07 (SD 14.61) years old, and mostly women (n=1141; 77.9%), White (n=1265; 86.4%), and employed (n=1030; 70.4%). Participants reported a mild level of depression (mean 9.43, SD 7.02), and were communicating more using technology (n=1164; 79.5%). The hierarchical regression indicated that people who were employed and experiencing lower levels of depression were more likely to report increased communication using technology during a lockdown period of the COVID-19 pandemic, and over time, men communicated more using technology. Increased use of technology to communicate was related to greater communication and the inability to see others due to the social distancing measures enacted during the lockdown. It was not related to a general increase in technology use during the lockdown. ConclusionsAlthough most participants reported increased use of technology to communicate during a lockdown period of the COVID-19 pandemic, this was more apparent in the employed and those experiencing low levels of depression. Moving forward, we should continue to monitor groups who may have been excluded from the benefits of support and communication using technology

Key Drivers and Facilitators of the Choice to Use mHealth Technology in People With Neurological Conditions:Observational Study

BACKGROUND: There is increasing interest in the potential uses of mobile health (mHealth) technologies, such as wearable biosensors, as supplements for the care of people with neurological conditions. However, adherence is low, especially over long periods. If people are to benefit from these resources, we need a better long-term understanding of what influences patient engagement. Previous research suggests that engagement is moderated by several barriers and facilitators, but their relative importance is unknown. OBJECTIVE: To determine preferences and the relative importance of user-generated factors influencing engagement with mHealth technologies for 2 common neurological conditions with a relapsing-remitting course: multiple sclerosis (MS) and epilepsy. METHODS: In a discrete choice experiment, people with a diagnosis of MS (n=141) or epilepsy (n=175) were asked to select their preferred technology from a series of 8 vignettes with 4 characteristics: privacy, clinical support, established benefit, and device accuracy; each of these characteristics was greater or lower in each vignette. These characteristics had previously been emphasized by people with MS and or epilepsy as influencing engagement with technology. Mixed multinomial logistic regression models were used to establish which characteristics were most likely to affect engagement. Subgroup analyses explored the effects of demographic factors (such as age, gender, and education), acceptance of and familiarity with mobile technology, neurological diagnosis (MS or epilepsy), and symptoms that could influence motivation (such as depression). RESULTS: Analysis of the responses to the discrete choice experiment validated previous qualitative findings that a higher level of privacy, greater clinical support, increased perceived benefit, and better device accuracy are important to people with a neurological condition. Accuracy was perceived as the most important factor, followed by privacy. Clinical support was the least valued of the attributes. People were prepared to trade a modest amount of accuracy to achieve an improvement in privacy, but less likely to make this compromise for other factors. The type of neurological condition (epilepsy or MS) did not influence these preferences, nor did the age, gender, or mental health status of the participants. Those who were less accepting of technology were the most concerned about privacy and those with a lower level of education were prepared to trade accuracy for more clinical support. CONCLUSIONS: For people with neurological conditions such as epilepsy and MS, accuracy (ie, the ability to detect symptoms) is of the greatest interest. However, there are individual differences, and people who are less accepting of technology may need far greater reassurance about data privacy. People with lower levels of education value greater clinician involvement. These patient preferences should be considered when designing mHealth technologies