Pricing through health apps generated data-Digital dividend as a game changer: Discrete choice experiment.

OBJECTIVES: The objective of this paper is to study under which circumstances wearable and health app users would accept a compensation payment, namely a digital dividend, to share their self-tracked health data. METHODS: We conducted a discrete choice experiment alternative, a separated adaptive dual response. We chose this approach to reduce extreme response behavior, considering the emotionally-charged topic of health data sales, and to measure willingness to accept. Previous experiments in lab settings led to demands for high monetary compensation. After a first online survey and two pre-studies, we validated four attributes for the final online study: monthly bonus payment, stakeholder handling the data (e.g., health insurer, pharmaceutical or medical device companies, universities), type of data, and data sales to third parties. We used a random utility framework to evaluate individual choice preferences. To test the expected prices of the main study for robustness, we assigned respondents randomly to one of two identical questionnaires with varying price ranges. RESULTS: Over a period of three weeks, 842 respondents participated in the main survey, and 272 respondents participated in the second survey. The participants considered transparency about data processing and no further data sales to third parties as very important to the decision to share data with different stakeholders, as well as adequate monetary compensation. Price expectations resulting from the experiment were high; pharmaceutical and medical device companies would have to pay an average digital dividend of 237.30€/month for patient generated health data of all types. We also observed an anchor effect, which means that people formed price expectations during the process and not ex ante. We found a bimodal distribution between relatively low price expectations and relatively high price expectations, which shows that personal data selling is a divisive societal issue. However, the results indicate that a digital dividend could be an accepted economic incentive system to gather large-scale, self-tracked data for research and development purposes. After the COVID-19 crisis, price expectations might change due to public sensitization to the need for big data research on patient generated health data. CONCLUSION: A continuing success of existing data donation models is highly unlikely. The health care sector needs to develop transparency and trust in data processing. An adequate digital dividend could be an effective long-term measure to convince a diverse and large group of people to share high-quality, continuous data for research purposes.

The Advent of Human Life Data Economics.

The recent bust of the Blockchain bubble was detrimental to many projects intended to return control and ownership of human life data to the hands of individuals. As the industry struggles to recover and rebrand, new applications of digital ledger technologies in traditional healthcare applications have started to emerge.

Potential of big data analytics in the French in vitro diagnostics market.

The new paradigm of the big data raises many expectations, particularly in the field of health. Curiously, even though medical biology laboratories generate a great amount of data, the opportunities offered by this new field are poorly documented. For better understanding the clinical context of chronical disease follow-up, for leveraging preventive and/or personalized medicine, the contribution of big data analytics seems very promising. It is within this framework that we have explored to use data of a Breton group of laboratories of medical biology to analyze the possible contributions of their exploitation in the improvement of the clinical practices and to anticipate the evolution of pathologies for the benefit of patients. We report here three practical applications derived from routine laboratory data from a period of 5 years (February 2010-August 2015): follow-up of patients treated with AVK according to the recommendations of the High authority of health (HAS), use of the new troponin markers HS and NT-proBNP in cardiology. While the risks and difficulties of using algorithms in the health domain should not be underestimated - quality, accessibility, and protection of personal data in particular - these first results show that use of tools and technologies of the big data repository could provide decisive support for the concept of "evidence based medicine".

Use of Patient-Authored Prehistory to Improve Patient Experiences and Accommodate Federal Law.

CONTEXT: Although federal law grants patients the right to view and amend their medical records, few studies have proposed a process for patients to coauthor their subjective history in their medical record. Allowing patients to fully disclose and document their medical history is an important step to improve the diagnostic process. OBJECTIVE: To evaluate patients' office experience before and after they authored their subjective medical history for the electronic health record. METHODS: Patients were mailed a prehistory form and presurvey to be completed before their family medicine office visit. On arrival to the office, the prehistory form was scanned into the electronic health record while the content was transcribed by hospital staff into the appropriate fields in the history component of the encounter note. Postsurveys were given to patients to be completed after their visit. Pre- and postsurveys measured the patients' perception of office visit quality as well as completeness and accuracy of their electronic health record documentation before and after their appointment. Medical staff surveys were collected weekly to measure the staff's viewpoint of the federal law that allows patients to view and amend their medical records. RESULTS: Of 405 patients who were asked to participate, 263 patients aged 14 to 94 years completed a presurvey and a prehistory form. Of those 263 patients, 134 completed a postsurvey. The pre- and postsurveys showed improved patient satisfaction with the office visit and high scores for documentation accuracy and completeness. Before filling out the prehistory form, 116 of 249 patients (46.6%) agreed or strongly agreed that they felt more empowered in their health care by completing the prehistory form compared with 110 of 131 (84.0%) who agreed or strongly agreed after the visit (P<.001). Staff members agreed that patients should have the right to view and amend their medical records in accordance with federal law. CONCLUSION: Empowering patients to contribute subjective information to their electronic health record has the potential to improve the diagnostic process. When conducting a medical encounter, the authors recommend having patients complete a prehistory form beforehand to improve the patient experience while accommodating federal law.

Socioeconomic disparities in adoption of personal health records over time.

OBJECTIVES: Since 2009, federal policies have incentivized medical organizations to provide medical record access to patients. We sought to track personal health record (PHR) adoption and differences by sociodemographic group over time. STUDY DESIGN: Random-digit-dial survey conducted for 4 consecutive years in New York state. METHODS: The Empire State Poll is a random digit-dial survey conducted every year in New York state, with an annual sample size of 800 individuals, weighted to create a representative state sample. We analyzed 4 consecutive years of poll data to examine trends. RESULTS: The proportion of New Yorkers using PHRs rose sharply, from 11% in 2012 to 27% in 2015. By 2015, there were no significant differences in PHR use between blacks and other races, but Hispanics and low-income respondents were less likely to use PHRs. CONCLUSIONS: During a 4-year period in which federal policies incentivized medical organizations to give medical record access to patients through PHRs and electronic portals, rates of PHR use increased rapidly in all sociodemographic groups. However, a digital divide remains evident, linked to Hispanic ethnicity and lower income.

Development of a tethered personal health record framework for early end-of-life discussions.

OBJECTIVES: End-of-life planning, known as advance care planning (ACP), is associated with numerous positive outcomes, such as improved patient satisfaction with care and improved patient quality of life in terminal illness. However, patient-provider ACP conversations are rarely performed or documented due to a number of barriers, including time required, perceived lack of skill, and a limited number of resources. Use of tethered personal health records (PHRs) may help streamline ACP conversations and documentations for outpatient workflows. Our objective was to develop an ACP-PHR framework that would be for use in a primary care, outpatient setting. STUDY DESIGN: Qualitative content analysis of focus groups and cognitive interviews (participatory design). METHODS: A novel PHR-ACP tool was developed and tested using data and feedback collected from 4 patient focus groups (n = 13), 1 provider focus group (n = 4), and cognitive interviews (n = 22). RESULTS: Patient focus groups helped develop a focused, 4-question PHR communication tool. Cognitive interviews revealed that, while patients felt framework content and workflow were generally intuitive, minor changes to content and workflow would optimize the framework. CONCLUSIONS: A focused framework for electronic ACP communication using a patient portal tethered to the PHR was developed. This framework may provide an efficient way to have ACP conversations in busy outpatient settings.

A comparison of English and French approaches to providing patients access to Summary Care Records: scope, consent, cost.

Online access to records is part of the process of empowering patients. National health services in both France and England have introduced systems to provide online access to summary health data. The English system was called the "Summary Care Record (SCR)," made accessible to patients through "HealthSpace". The French system Dossier Médical Personnel (DMP) is a patient controlled record clinicians enter data into. The objective was to compare the programmes and lessons from the introduction of patient access. We carried out a literature review. The English system has been progressively de-scoped, with HealthSpace due to close in 2013, only 0.01% of the population signing up for "advanced accounts". The French system slowly grows as more documents are added; though only 0.31% of the population have opened a DMP. The English SCR has an opt-out consent model, whereas the French DMP is patient controlled opt-in consent model. The SCR sits within an NHS intranet while the DMP sits on the Internet. Both systems have costs of around 200 million Euro. Providing patients online access to their medical records is potentially empowering. However, the English HealthSpace and SCR have failed to deliver and are due to be withdrawn as methods of providing patients online access. The French system is still in operation but much criticized for its high costs and low uptake. The design of these systems does not appear to have met patients' needs or been readily integrated into physicians workflow.

Cost-effectiveness of a shared computerized decision support system for diabetes linked to electronic medical records.

BACKGROUND: Computerized decision support systems (CDSSs) are believed to enhance patient care and reduce healthcare costs; however the current evidence is limited and the cost-effectiveness remains unknown. OBJECTIVE: To estimate the long-term cost-effectiveness of a CDSS linked to evidence-based treatment recommendations for type 2 diabetes. METHODS: Using the Ontario Diabetes Economic Model, changes in factors (eg, HbA1c) from a randomized controlled trial were used to estimate cost-effectiveness. The cost of implementation, development, and maintenance of the core dataset, and projected diabetes-related complications were included. The base case assumed a 1-year treatment effect, 5% discount rate, and 40-year time horizon. Univariate, one-way sensitivity analyses were carried out by altering different parameter values. The perspective was the Ontario Ministry of Health and costs were in 2010 Canadian dollars. RESULTS: The cost of implementing the intervention was $483,699. The one-year intervention reduced HbA1c by 0.2 and systolic blood pressure by 3.95 mm Hg, but increased body mass index by 0.02 kg/m², resulting in a relative risk reduction of 14% in the occurrence of amputation. The model estimated that the intervention resulted in an additional 0.0117 quality-adjusted life year; the incremental cost-effectiveness ratio was $160,845 per quality-adjusted life-year. CONCLUSION: The web-based prototype decision support system slightly improved short-term risk factors. The model predicted moderate improvements in long-term health outcomes. This disease management program will need to develop considerable efficiencies in terms of costs and processes or improved effectiveness to be considered a cost-effective intervention for treating patients with type 2 diabetes.

Rapid progress or lengthy process? Electronic personal health records in mental health.

A major objective of many healthcare providers is to increase patients' participation in their own care. The introduction of electronic personal health records (ePHRs) may help to achieve this. An ePHR is an electronic database of an individual's health information, accessible to and maintained by the patient. ePHRs are very much in vogue, with an increasing number of studies reporting their potential utility as well as cost. However, the vast majority of these studies focus on general healthcare. Little attempt has been made to document the specific problems which might occur throughout the implementation of ePHRs in mental health. This review identifies such concerns through an electronic search of the literature. Several potential difficulties are highlighted and addressed, including access to information technology, identifying relevant populations and the handling of sensitive information. Special attention is paid to the concept of 'empowerment' and what this means in relation to ePHRs.

In the spotlight: Health Information Systems--PHR and value based healthcare.

The author discusses recent progress in personal health records (PHR). The column is structured as follows: first, a look at what is driving health reform concluding with the need to make "value" the first priority. The role of citizens and patients in the value drive is then discussed. They must be empowered to act as co-producers in cooperation with healthcare professionals. Lastly, the role of the PHR and services based on the PHR will be elaborated.

The value of personal health record (PHR) systems.

Personal health records (PHRs) are a rapidly growing area of health information technology despite a lack of significant value-based assessment.Here we present an assessment of the potential value of PHR systems, looking at both costs and benefits.We examine provider-tethered, payer-tethered, and third-party PHRs, as well as idealized interoperable PHRs. An analytical model was developed that considered eight PHR application and infrastructure functions. Our analysis projects the initial and annual costs and annual benefits of PHRs to the entire US over the next 10 years.This PHR analysis shows that all forms of PHRs have initial net negative value. However, at the end of 10 years, steady state annual net value ranging from$13 billion to -$29 billion. Interoperable PHRs provide the most value, followed by third-party PHRs and payer-tethered PHRs also showing positive net value. Provider-tethered PHRs constantly demonstrating negative net value.