Spontaneously generated online patient experience data - how and why is it being used in health research: an umbrella scoping review.

PURPOSE: Social media has led to fundamental changes in the way that people look for and share health related information. There is increasing interest in using this spontaneously generated patient experience data as a data source for health research. The aim was to summarise the state of the art regarding how and why SGOPE data has been used in health research. We determined the sites and platforms used as data sources, the purposes of the studies, the tools and methods being used, and any identified research gaps. METHODS: A scoping umbrella review was conducted looking at review papers from 2015 to Jan 2021 that studied the use of SGOPE data for health research. Using keyword searches we identified 1759 papers from which we included 58 relevant studies in our review. RESULTS: Data was used from many individual general or health specific platforms, although Twitter was the most widely used data source. The most frequent purposes were surveillance based, tracking infectious disease, adverse event identification and mental health triaging. Despite the developments in machine learning the reviews included lots of small qualitative studies. Most NLP used supervised methods for sentiment analysis and classification. Very early days, methods need development. Methods not being explained. Disciplinary differences - accuracy tweaks vs application. There is little evidence of any work that either compares the results in both methods on the same data set or brings the ideas together. CONCLUSION: Tools, methods, and techniques are still at an early stage of development, but strong consensus exists that this data source will become very important to patient centred health research.

Normal-phase chromatographic separation of pigmented wine tannin by nano-HPLC quadrupole time-of-flight tandem mass spectrometry and identification of candidate molecular features.

BACKGROUND: As a wine ages, altered sensory properties lead to changes in perceived quality and value. Concurrent modifications of anthocyanin and tannin occur forming pigmented tannin, softening astringency and retaining persistent color. Wine tannin extracts of 1990 and 2010 vintages of Oakville Station Cabernet Sauvignon have been analyzed using normal-phase chromatography with tandem quadrupole time-of-flight mass spectrometry (QToF) to investigate the compositional differences in their pigmented tannin fractions. RESULTS: The older wine demonstrates much greater structural diversity and a range of more polar compounds, while the younger wine contains fewer observed ion peaks. Several hundred molecular features are observable, and, as expected, there is progression to higher molecular weights after long aging. Between 7% and 16% of molecular features could be matched to a database of anticipated pigmented tannin compounds. Many signals had multiple possible isomeric identities, but fragmentation to resolve their identity was stymied by low sensitivity of the tandem mass spectrometric capability provided by QToF, so isomeric disambiguation is incomplete. CONCLUSIONS: The chromatography displayed a high degree of resolution in aged wines, separating many of the known pigment types, including aldehyde bridged compounds, pyranoanthocyanins and direct condensation products among others, as well as resolving a great number of unknown compounds. Expanding our understanding of red wine pigments will lead to better wines as winemakers will be able to associate quality with particular wine pigment profiles once we can distinguish the relevant patterns in those pigments. © 2021 Society of Chemical Industry.

Combinatorics of proanthocyanidins in wine.

Condensed tannin are polymers comprised of procyanidin and prodelphinidin units and found in wine, chocolate, apples and many other foods. Current analytical methods to characterize these tannins provide aggregate functional results, such as quantified protein binding, important for its relation to astringency. A more detailed understanding of the constituents has become accessible via mass spectrometry (MS) with high resolution and tandem MS techniques. Analysis of wine tannin by these methods provides thousands of signals, far too many to assess using standard techniques. We propose targeted mass filtering using a table of predicted proanthocyanidin oligomers. Condensed tannin in wine is comprised of 4 constitutionally distinct subunits (catechin, catechin gallate, gallocatechin, and gallocatechin gallate), each of which has 4 stereoisomers. Accounting for all 16 subunits, there are over 5 million possible oligomers from monomer to decamer. Since mass spectroscopy is generally blind to stereoisomeric variations, the number of possible observable MS signals can be reduced to a list of 1000. By applying specialized combinatoric functions, a table for the now manageable compilation of possible proanthocyanidin oligomers has been created containing the compound subunit compositions, molecular formulae, and molecular ion signals for the interpretation of condensed tannin mass spectra. Mathematical formulae for the enumeration of possible compounds in any chemical system composed of polymers with discrete subunits resulted from this endeavor and are presented in general form with specific application to this system. As these condensed tannins react with anthocyanins, forming pigmented tannin, the table created here can also be the foundation of a database for the very complex red wine pigments. The system described here could also be applied to the analysis of proanthocyanidins in chocolate and other foods.

Timely Digital Patient-Clinician Communication in Specialist Clinical Services for Young People: A Mixed-Methods Study (The LYNC Study).

BACKGROUND: Young people (aged 16-24 years) with long-term health conditions can disengage from health services, resulting in poor health outcomes, but clinicians in the UK National Health Service (NHS) are using digital communication to try to improve engagement. Evidence of effectiveness of this digital communication is equivocal. There are gaps in evidence as to how it might work, its cost, and ethical and safety issues. OBJECTIVE: Our objective was to understand how the use of digital communication between young people with long-term conditions and their NHS specialist clinicians changes engagement of the young people with their health care; and to identify costs and necessary safeguards. METHODS: We conducted mixed-methods case studies of 20 NHS specialist clinical teams from across England and Wales and their practice providing care for 13 different long-term physical or mental health conditions. We observed 79 clinical team members and interviewed 165 young people aged 16-24 years with a long-term health condition recruited via case study clinical teams, 173 clinical team members, and 16 information governance specialists from study NHS Trusts. We conducted a thematic analysis of how digital communication works, and analyzed ethics, safety and governance, and annual direct costs. RESULTS: Young people and their clinical teams variously used mobile phone calls, text messages, email, and voice over Internet protocol. Length of clinician use of digital communication varied from 1 to 13 years in 17 case studies, and was being considered in 3. Digital communication enables timely access for young people to the right clinician at the time when it can make a difference to how they manage their health condition. This is valued as an addition to traditional clinic appointments and can engage those otherwise disengaged, particularly at times of change for young people. It can enhance patient autonomy, empowerment and activation. It challenges the nature and boundaries of therapeutic relationships but can improve trust. The clinical teams studied had not themselves formally evaluated the impact of their intervention. Staff time is the main cost driver, but offsetting savings are likely elsewhere in the health service. Risks include increased dependence on clinicians, inadvertent disclosure of confidential information, and communication failures, which are mostly mitigated by young people and clinicians using common-sense approaches. CONCLUSIONS: As NHS policy prompts more widespread use of digital communication to improve the health care experience, our findings suggest that benefit is most likely, and harms are mitigated, when digital communication is used with patients who already have a relationship of trust with the clinical team, and where there is identifiable need for patients to have flexible access, such as when transitioning between services, treatments, or lived context. Clinical teams need a proactive approach to ethics, governance, and patient safety.

Understanding the Security and Privacy Concerns About the Use of Identifiable Health Data in the Context of the COVID-19 Pandemic: Survey Study of Public Attitudes Toward COVID-19 and Data-Sharing.

BACKGROUND: The COVID-19 pandemic increased the availability and use of population and individual health data to optimize tracking and analysis of the spread of the virus. Many health care services have had to rapidly digitalize in order to maintain the continuity of care provision. Data collection and dissemination have provided critical support for defending against the spread of the virus since the beginning of the pandemic; however, little is known about public perceptions of and attitudes toward the use, privacy, and security of data. OBJECTIVE: The goal of this study is to better understand people's willingness to share data in the context of the COVID-19 pandemic. METHODS: A web-based survey was conducted on individuals' use of and attitudes toward health data for individuals aged 18 years and older, and in particular, with a reported diagnosis of a chronic health condition placing them at the highest risk of severe COVID-19. RESULTS: In total, 4764 individuals responded to this web-based survey, of whom 4674 (98.1%) reported a medical diagnosis of at least 1 health condition (3 per person on average), with type 2 diabetes (n=2974, 62.7%), hypertension (n=2147, 45.2%), and type 1 diabetes (n=1299, 27.4%) being most prominent in our sample. In general, more people are comfortable with sharing anonymized data than personally identifiable data. People reported feeling comfortable sharing data that were able to benefit others; 66% (3121 respondents) would share personal identifiable data if its primary purpose was deemed beneficial for the health of others. Almost two-thirds (n=3026; 63.9%) would consent to sharing personal, sensitive health data with government or health authority organizations. Conversely, over a quarter of respondents (n=1297, 27.8%) stated that they did not trust any organization to protect their data, and 54% (n=2528) of them reported concerns about the implications of sharing personal information. Almost two-thirds (n=3054, 65%) of respondents were concerned about the provisions of appropriate legislation that seeks to prevent data misuse and hold organizations accountable in the case of data misuse. CONCLUSIONS: Although our survey focused mainly on the views of those living with chronic health conditions, the results indicate that data sensitivity is highly contextual. More people are more comfortable with sharing anonymized data rather than personally identifiable data. Willingness to share data also depended on the receiving body, highlighting trust as a key theme, in particular who may have access to shared personal health data and how they may be used in the future. The nascency of legal guidance in this area suggests a need for humanitarian guidelines for data responsibility during disaster relief operations such as pandemics and for involving the public in their development.

Spontaneously Generated Online Patient Experience of Modafinil: A Qualitative and NLP Analysis.

Objective: To compare the findings from a qualitative and a natural language processing (NLP) based analysis of online patient experience posts on patient experience of the effectiveness and impact of the drug Modafinil. Methods: Posts (n = 260) from 5 online social media platforms where posts were publicly available formed the dataset/corpus. Three platforms asked posters to give a numerical rating of Modafinil. Thematic analysis: data was coded and themes generated. Data were categorized into PreModafinil, Acquisition, Dosage, and PostModafinil and compared to identify each poster's own view of whether taking Modafinil was linked to an identifiable outcome. We classified this as positive, mixed, negative, or neutral and compared this with numerical ratings. NLP: Corpus text was speech tagged and keywords and key terms extracted. We identified the following entities: drug names, condition names, symptoms, actions, and side-effects. We searched for simple relationships, collocations, and co-occurrences of entities. To identify causal text, we split the corpus into PreModafinil and PostModafinil and used n-gram analysis. To evaluate sentiment, we calculated the polarity of each post between -1 (negative) and +1 (positive). NLP results were mapped to qualitative results. Results: Posters had used Modafinil for 33 different primary conditions. Eight themes were identified: the reason for taking (condition or symptom), impact of symptoms, acquisition, dosage, side effects, other interventions tried or compared to, effectiveness of Modafinil, and quality of life outcomes. Posters reported perceived effectiveness as follows: 68% positive, 12% mixed, 18% negative. Our classification was consistent with poster ratings. Of the most frequent 100 keywords/keyterms identified by term extraction 88/100 keywords and 84/100 keyterms mapped directly to the eight themes. Seven keyterms indicated negation and temporal states. Sentiment was as follows 72% positive sentiment 4% neutral 24% negative. Matching of sentiment between the qualitative and NLP methods was accurate in 64.2% of posts. If we allow for one category difference matching was accurate in 85% of posts. Conclusions: User generated patient experience is a rich resource for evaluating real world effectiveness, understanding patient perspectives, and identifying research gaps. Both methods successfully identified the entities and topics contained in the posts. In contrast to current evidence, posters with a wide range of other conditions found Modafinil effective. Perceived causality and effectiveness were identified by both methods demonstrating the potential to augment existing knowledge.

Mobile consulting as an option for delivering healthcare services in low-resource settings in low- and middle-income countries: A mixed-methods study.

OBJECTIVE: Remote or mobile consulting is being promoted to strengthen health systems, deliver universal health coverage and facilitate safe clinical communication during coronavirus disease 2019 and beyond. We explored whether mobile consulting is a viable option for communities with minimal resources in low- and middle-income countries. METHODS: We reviewed evidence published since 2018 about mobile consulting in low- and middle-income countries and undertook a scoping study (pre-coronavirus disease) in two rural settings (Pakistan and Tanzania) and five urban slums (Kenya, Nigeria and Bangladesh), using policy/document review, secondary analysis of survey data (from the urban sites) and thematic analysis of interviews/workshops with community members, healthcare workers, digital/telecommunications experts, mobile consulting providers, and local and national decision-makers. Project advisory groups guided the study in each country. RESULTS: We reviewed four empirical studies and seven reviews, analysed data from 5322 urban slum households and engaged with 424 stakeholders in rural and urban sites. Regulatory frameworks are available in each country. Mobile consulting services are operating through provider platforms (n = 5-17) and, at the community level, some direct experience of mobile consulting with healthcare workers using their own phones was reported - for emergencies, advice and care follow-up. Stakeholder willingness was high, provided challenges are addressed in technology, infrastructure, data security, confidentiality, acceptability and health system integration. Mobile consulting can reduce affordability barriers and facilitate care-seeking practices. CONCLUSIONS: There are indications of readiness for mobile consulting in communities with minimal resources. However, wider system strengthening is needed to bolster referrals, specialist services, laboratories and supply chains to fully realise the continuity of care and responsiveness that mobile consulting services offer, particularly during/beyond coronavirus disease 2019.

Mobile consulting (mConsulting) and its potential for providing access to quality healthcare for populations living in low-resource settings of low- and middle-income countries.

OBJECTIVE: The poorest populations of the world lack access to quality healthcare. We defined the key components of consulting via mobile technology (mConsulting), explored whether mConsulting can fill gaps in access to quality healthcare for poor and spatially marginalised populations (specifically rural and slum populations) of low- and middle-income countries, and considered the implications of its take-up. METHODS: We utilised realist methodology. First, we undertook a scoping review of mobile health literature and searched for examples of mConsulting. Second, we formed our programme theories and identified potential benefits and hazards for deployment of mConsulting for poor and spatially marginalised populations. Finally, we tested our programme theories against existing frameworks and identified published evidence on how and why these benefits/hazards are likely to accrue. RESULTS: We identified the components of mConsulting, including their characteristics and range. We discuss the implications of mConsulting for poor and spatially marginalised populations in terms of competent care, user experience, cost, workforce, technology, and the wider health system. CONCLUSIONS: For the many dimensions of mConsulting, how it is structured and deployed will make a difference to the benefits and hazards of its use. There is a lack of evidence of the impact of mConsulting in populations that are poor and spatially marginalised, as most research on mConsulting has been undertaken where quality healthcare exists. We suggest that mConsulting could improve access to quality healthcare for these populations and, with attention to how it is deployed, potential hazards for the populations and wider health system could be mitigated.

Omics Forecasting: Predictive Calculations Permit the Rapid Interpretation of High-Resolution Mass Spectral Data from Complex Mixtures.

For some complex mixtures, chromatographic techniques are insufficient to separate the large numbers of compounds present. In addition, these mixtures often contain compounds with similar or identical molecular masses and shared fragmentation transitions. Advancements in mass spectrometry have provided more and more detailed molecular profiles with significant increases in resolution. This has led to a capacity to distinguish a very large number of compounds in complex mixtures, providing overwhelming data sets. The approach of calculating molecular formulas from a mass list has become more and more problematic as the number of signals has increased exponentially, to the point that it has become impossible to manually interpret the thousands of mass signals. The current approach is to calculate a list of possible formulas that fall within a specific mass error of the observed signal. Then, one must look for possible structures that can be derived from each entry on the list of formulas. However, an alternative approach is to anticipate the possible structures of a particular set of compounds, such as red wine pigments, and then compare the ion signals against a predicted list. To that end, starting with known wine pigment types, we have generated a set of expected wine pigment variants based on known derivatives of condensed tannin oligomers, anthocyanins, and fermentation products. After the ability to distinguish compounds by mass spectrometry was accounted for, over 1 million results were generated consisting of known and anticipated wine pigments. A comparison with a small sample of wine phenolic fractions show a large number of matches, suggesting that this approach may be helpful.

The ethics of data and of data science: an economist's perspective.

Data collection and modelling are increasingly important in social science and science-based policy, but threaten to crowd out other ways of thinking. Economists recognize that markets embody and shed light on human sentiments. However, their ethical consequences have been difficult to interpret, let alone manage. Although economic mechanisms are changed by data intensity, they can be redesigned to restore their benefits. We conclude with four cautions: if data are good, more may not be better; scientifically desirable data properties may not help policy; consent is a double-edged tool; and data exist only because someone thought to capture and codify them.This article is part of the themed issue 'The ethical impact of data science'.

The Impact of Online Social Networks on Health and Health Systems: A Scoping Review and Case Studies.

Interaction through online social networks potentially results in the contestation of prevailing ideas about health and health care, and to mass protest where health is put at risk or health care provision is wanting. Through a review of the academic literature and case studies of four social networking health sites (PatientsLikeMe, Mumsnet, Treatment Action Campaign, and My Pro Ana), we establish the extent to which this phenomenon is documented, seek evidence of the prevalence and character of health-related networks, and explore their structure, function, participants, and impact, seeking to understand how they came into being and how they sustain themselves. Results indicate mass protest is not arising from these established health-related networking platforms. There is evidence of changes in policy following campaigning activity prompted by experiences shared through social networking such as improved National Health Service care for miscarriage (a Mumsnet campaign). Platform owners and managers have considerable power to shape these campaigns. Social networking is also influencing health policy indirectly through increasing awareness and so demand for health care. Transient social networking about health on platforms such as Twitter were not included as case studies but may be where the most radical or destabilizing influence on health care policy might arise.

Improving health outcomes for young people with long term conditions: The role of digital communication in current and future patient-clinician communication for NHS providers of specialist clinical services for young people - LYNC study protocol.

BACKGROUND: Young people living with long term conditions are vulnerable to health service disengagement. This endangers their long term health. Studies report requests for digital forms of communication - email, text, social media - with their health care team. Digital clinical communication is troublesome for the UK NHS. AIM: In this article we aim to present the research protocol for evaluating the impacts and outcomes of digital clinical communications for young people living with long term conditions and provide critical analysis of their use, monitoring and evaluation by NHS providers (LYNC study: Long term conditions, Young people, Networked Communications). METHODS: The research involves: (a) patient and public involvement activities with 16-24 year olds with and without long term health conditions; (b) six literature reviews; (c) case studies - the main empirical part of the study - and (d) synthesis and a consensus meeting. Case studies use a mixed methods design. Interviews and non-participant observation of practitioners and patients communicating in up to 20 specialist clinical settings will be combined with data, aggregated at the case level (non-identifiable patient data) on a range of clinical outcomes meaningful within the case and across cases. We will describe the use of digital clinical communication from the perspective of patients, clinical staff, support staff and managers, interviewing up to 15 young people and 15 staff per case study. Outcome data includes emergency admissions, A&E attendance and DNA (did not attend) rates. Case studies will be analysed to understand impacts of digital clinical communication on patient health outcomes, health care costs and consumption, ethics and patient safety.

Health and Healthcare: Assessing the Real World Data Policy Landscape in Europe.

Real-world data (RWD) is an umbrella term for different types of data that are not collected in conventional randomised controlled trials. RWD in the healthcare sector comes from various sources and includes patient data, data from clinicians, hospital data, data from payers and social data. There are already examples of ways in which research has contributed to the provision, construction and capture of RWD to improve health outcomes. However, to maximise the potential of these new pools of data in the healthcare sector, stakeholders need to identify pathways and processes which will allow them to efficiently access and use RWD in order to achieve better research outcomes and improved healthcare delivery. Current efforts to improve access to RWD and facilitate its use take place in a context of resource scarcity. Based on a literature review, case studies, a small set of interviews of experts from public and private organisations and a scenario based workshop, the study outlined possible strategies to illustrate how RWD standards development could facilitate RWD-based research. By investigating the current forms and uses of RWD in Europe, this study has highlighted their significant potential for assessing the (short- or long-term) impact of different drugs or medical treatments and for informing and improving healthcare service delivery. Although the potential of RWD use seems quite clear, this research reveals barriers that restrict further development towards its full exploitation: the absence of common standards for defining the content and quality of RWD, methodological barriers that may limit the potential benefits of RWD analysis, governance issues underlying the absence of standards for collaboration between stakeholders, and privacy concerns and binding data protection legislation which can be seen to restrict access and use of data.

Tackling Problem Drug Use.

The National Audit Office (NAO) is conducting a value-for-money study on the UK Government's 2008 drug strategy, Drugs: Protecting Families and Communities ("the Strategy"). The NAO study, Tackling Problem Drug Use, focuses in particular on local delivery authorities' capacity and capability to effectively tackle problem drug use (PDU) through delivery of local services. To inform the NAO's value-for-money study, RAND Europe performed a literature review on problem drug use and reviewed the evidence base, both literature and data, underpinning the Strategy. One of the key findings is that the narrower focus in the UK on most significant harms may be useful, but also carries risks and drawbacks. In addition, we find that the Strategy draws on robust evidence in the area of drug treatment and drug-related crime; however, other topics would benefit from further context or detail, and in places it is difficult to relate the evidence base to implications for intervention and delivery of services.

Social networks--the future for health care delivery.

With the rapid growth of online social networking for health, health care systems are experiencing an inescapable increase in complexity. This is not necessarily a drawback; self-organising, adaptive networks could become central to future health care delivery. This paper considers whether social networks composed of patients and their social circles can compete with, or complement, professional networks in assembling health-related information of value for improving health and health care. Using the framework of analysis of a two-sided network--patients and providers--with multiple platforms for interaction, we argue that the structure and dynamics of such a network has implications for future health care. Patients are using social networking to access and contribute health information. Among those living with chronic illness and disability and engaging with social networks, there is considerable expertise in assessing, combining and exploiting information. Social networking is providing a new landscape for patients to assemble health information, relatively free from the constraints of traditional health care. However, health information from social networks currently complements traditional sources rather than substituting for them. Networking among health care provider organisations is enabling greater exploitation of health information for health care planning. The platforms of interaction are also changing. Patient-doctor encounters are now more permeable to influence from social networks and professional networks. Diffuse and temporary platforms of interaction enable discourse between patients and professionals, and include platforms controlled by patients. We argue that social networking has the potential to change patterns of health inequalities and access to health care, alter the stability of health care provision and lead to a reformulation of the role of health professionals. Further research is needed to understand how network structure combined with its dynamics will affect the flow of information and potentially the allocation of health care resources.

Endemic cattle diseases: comparative epidemiology and governance.

Cattle are infected by a community of endemic pathogens with different epidemiological properties that invoke different managerial and governmental responses. We present characteristics of pathogens that influence their ability to persist in the UK, and describe a qualitative framework of factors that influence the political response to a livestock disease. We develop simple transmission models for three pathogens (bovine viral diarrhoea virus, bovine herpesvirus and Mycobacterium avium spp. paratuberculosis) using observed cattle movements, and compare the outcomes to an extensive dataset. The results demonstrate that the epidemiology of the three pathogens is determined by different aspects of within- and between-farm processes, which has economic, legal and political implications for control. We consider how these pathogens, and Mycobacterium bovis (the agent of bovine tuberculosis), may be classified by the process by which they persist and by their political profile. We further consider the dynamic interaction of these classifications with pathogen prevalence and with the action taken by the government.