利用区块链来加强患者报告的观察指标发展.pdf

1、 The Use of a Blockchain to Foster the Development of Patient-Reported Outcome Measures JASON C.GOLDWATER,MA,MPA August 8,2016 2 Introduction to Patient Related Outcome Measures Patient-related outcome measures(PROMs),which focus on outcomes that are directly related to the patient,have taken on add

2、ed importance and significance over the past several years.1 This is due,in part,to the increased attention focused on the patient experience of care and to provide a patient-focused assessment on the burden and impact of disease.PROMs can include symptoms and other aspects of health related quality

3、 of life indicators such as physical or social function,treatment adherence,and satisfaction with treatment.They can also facilitate more accurate patient-physician communication in terms of the burden of treatment-related morbidities by providing a more detailed and complete evaluation of treatment

4、s for specific conditions,such as cancer or multiple sclerosis.2 PROMs are distinct from traditional clinical efficacy measures(e.g.,survival in cancer,smoking cessation)because they directly reflect the impact of disease and its treatment from the patients perspective.1 It can examine the balance b

5、etween the efficiency of the treatment and its burden on the patient.It is also effective in looking at areas such as physical functioning and overall well-being,and highlighting the efficacy and safety of treatments in relation to its overall clinical benefit.Because the measures themselves are dev

6、eloped from the patients perspective,it can also facilitate greater patient involvement in treatment decision-making as well as providing guidance for health care decisions.1 However,there is difficulty in the development,implementation and sustainability of PROMs over the long-term.3 The success of

7、 a well-developed PROM that adequately and accurately reflect that patients perspective relies on the use of an instrument that is psychometrically tested and validated and can capture the burden of disease or treatment.This means the instrument must be reliable,in that the PROM yields the same metr

8、ic for evaluation each time it is administered,providing that the construct being measured has not changed.Additionally,the PROM must always measure its intended objective,and not demonstrate significant variation which would obscure the results and provide little value to either the patient or prov

9、ider.One of the most effective ways of demonstrating reliability and validity of the psychometric properties of an instrument designed to collected patient-reported data is to provide enough evidence to demonstrate it can reliably measure its intended target.3 The development and testing of the inst

10、rument,in addition to the development and implementation of the PROM,is both time-consuming and expensive.4 In order to appropriately identify patient experiences,trends and issues that have the most significance,an instrument must be tested through a variety of methods.These may include cognitive i

11、nterviewing among patient groups,focus groups and behavior coding.To ensure that the results are statistically valid,the appropriate patient population must be included,with the right combination of sociodemographic characteristics,such as race,age,gender,marital status and others.While numerous ins

12、truments have been developed successfully to accurately assess patient-based outcomes in areas such as neurology and depression,the process itself can be burdensome,causing the actual development and implementation of a PROM to take two to three years to complete.5 3 The Internet of Things for PROM

13、Development A potential alternative to the use of standardized instruments to collect data and provide a foundation for the development of a PROM is the use of technologies associated with the Internet of Things(IoT).The US National Intelligence Council defines this term as,“the general idea of thin

14、gs,especially everyday objects,that are readable,recognizable,locatable,addressable and controllable via the Internet whether through Remote Frequency Identification(RFID),wireless local-area networks(LANs),wide-area networks(WANs)or other means.6 In a larger context,while the most familiar Internet

15、-connected devices are computer such as laptops,servers,smartphones,and tables,the IoT concept refers to everyday objects that are starting to come online with the use of embedded sensors and microprocessors,communicating with each other and the Internet.In the area of health,this refers to the use

16、of self-tracking devices and personal environment monitoring applications,such as those that provide automate digital health monitoring,ambient behavior management suggestions and other real-time personalized recommendations.7 This use of these technologies has rapidly increased as over 80%of all adults use the Internet to search for health information,connect with patients similar to themselves,and share information regarding their condition or the facilities in which they seek treatment.7 Ther