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 Table of Contents  
REVIEW ARTICLE
Year : 2022  |  Volume : 3  |  Issue : 3  |  Page : 242-248

Patient-Generated health data: The high-tech high-touch approach: Where technology meets healthcare – A narrative review


1 Department of Nursing, All India Institute of Medical Sciences, Bhopal, Madhya Pradesh, India
2 Department of Community and Family Medicine, All India Institute of Medical Sciences, Bhopal, Madhya Pradesh, India

Date of Submission15-Feb-2022
Date of Decision19-Aug-2022
Date of Acceptance22-Oct-2022
Date of Web Publication28-Dec-2022

Correspondence Address:
Dr. Naseema Shafqat
Nursing College, All India Institute of Medical Sciences, Bhopal, Madhya Pradesh
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/JME.JME_9_22

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  Abstract 


Patient-generated health data are a promising arena that can create a revolutionary change in the field of healthcare. Although a lot has been done globally to incorporate the information and data directly from the patient for their benefit, patient-generated health data (PGHD) remains a nascent area for the stakeholders including the clients themselves as well as the healthcare professionals and the system itself. This narrative review aims to familiarise the readers with the concept of PGHD, the strategies utilised by key organisations across the globe and to make them cognizant of the challenges and potential hurdles in the implementation and amalgamation of PGHD into the healthcare system. With the advancement in information technologies, artificial intelligence and remarkably evolving software, it has become easy to access health-related data such as heart rate, blood pressure, pulse oximetry and even electrocardiograms at the comfort of our homes with the touch of a button. The easy availability and affordability of smartphones for most of the population have led to the blooming of the wearable device industry, and there is a surge of primary health-related data overflowing around us everywhere. Proper utilisation of this deluge of data in the form of PGHD can reduce the healthcare cost and burden of care, especially in developing countries by improving the patient–provider interactions and bridging the existing information gaps. PGHD plays a significant role in health promotion also by supporting self-management activities such as healthy eating and exercise. In this modern era of precision health with comprehensive veracity, it becomes essential that researchers and healthcare professionals should lead from the front in the amalgamation of PGHD into healthcare.

Keywords: Electronic health records, patient-generated health data, patient health records, patient-related information, patient-reported outcomes, self-health


How to cite this article:
Shafqat N, Verma R, Bali S, George T J. Patient-Generated health data: The high-tech high-touch approach: Where technology meets healthcare – A narrative review. J Med Evid 2022;3:242-8

How to cite this URL:
Shafqat N, Verma R, Bali S, George T J. Patient-Generated health data: The high-tech high-touch approach: Where technology meets healthcare – A narrative review. J Med Evid [serial online] 2022 [cited 2023 Feb 1];3:242-8. Available from: http://www.journaljme.org/text.asp?2022/3/3/242/365883




  Introduction Top


The current propagation of client-directed, personal computing technology and simple handiness of inexpensive wearable devices and sensors have mustered the generation of biomedically relevant information databases with promising health applications.[1],[2] Over the past decades, high technological advances within the field of the healthcare system have instilled suppression of patient voice from the immense mass of routinely collected digital health data. This, in turn, has triggered colossal dissatisfaction amongst the public and the development of apathy towards the healthcare professionals. As a result, it has catalysed global attention to the origination of client-driven portals to capture and transmit patient-generated health data (PGHD).[3],[4]

PGHD can be outlined as the health-related data - including the biometric information, health history, symptoms, treatment history and lifestyle choices created, recorded, gathered or inferred by or from patients/caregivers to assist in addressing a health concern.[5],[6] This simply means that patients (not providers) are those accountable for creating their health information and it is them who have the eventual control over the how and with whom their data will be shared. This makes it an additional distinguishing feature in the clinical practice arena.[6],[7],[8]

PGHD, namely biometric data on heart rate, temperature, SpO2, blood pressure, weight, BMI, physical activity, calorie intake/expenditure and duration of sleep, are simply measurable information but might give outsized information for higher quality care to clients at the comfort of their home and surroundings.[9],[10] In recent times, there has been a rapid expansion in the field of device-based biometric sensors such as digital or infrared thermometers, pulse oximeters, heart rate and blood pressure monitors, blood glucose meters, pedometers, portable electrocardiograms (ECGs) and even high-quality CPR monitoring.[11],[12] These devices usually transmit information to an application on a smartphone or tab or smartwatches that record the readings. Evidence from research studies has shown the reliable accuracy of such devices in comparison with gold-standard devices such as the sphygmomanometer or ECGs. Most of these devices or products are regulated by the Federal Agency as class II medical devices, indicating that they are safe to use except the glucose monitors, which demand higher regulative scrutiny.[1],[5],[13] Given the increasing demand for tech-based health monitoring, it is obvious that biometric devices will continue to develop in terms of accuracy and reliability.

PGHD has expedited in providing an unequalled chance to keep track of a patient's long-term illness and chronic conditions.[8],[11],[13] It intends to involve patients as partners in their care and progress towards a truly high-tech but high-touch approach in the existing healthcare system. This narrative review aims to synthesise the evidence regarding the concept of PGHD, its global utilisation and the opportunities and challenges for including PGHD in the healthcare delivery system.


  Methods and Search Strategy Top


A scientific literature review was performed to look at the utilisation of PGHD in clinical practice globally. We searched Google Scholar, PubMed, EMBASE, CINAHL, Web of Science and Scopus using the key terms: patient generated health data, patient-generated data, patient-reported outcomes, self-monitoring data, self-tracking, wearable, mobile health and m-health, etc.


  Global Strategy on Patient-Generated Health Data: Use of High-Tech Personalised Approach Top


Several international establishments are aligning towards consistent integration of the patient's subjective information and experiences into health records through PGHD as a part of routine clinical practice. Key organisations have centred their focus on the significance of information technology for creating an improvised healthcare system. They have started incorporating PGHD in recent years. Some of the foremost establishments that have pioneered in this field include.

Kaiser Permanente

It is an integratedly managed American care consortium, based in Oakland, California, United States. It was founded in 1945 by industrialist Henry J. Kaiser and physician Sidney Garfield and is made up of three distinct yet interdependent groups of entities: the Kaiser Foundation Health Plan, Kaiser Foundation Hospitals and regional Permanente Medical Groups. It is one of the largest non-profit healthcare plans in the United States, with over 12 million members with 39 hospitals and approximately 700 medical offices, with more than 300,000 personnel, including over 80,000 physicians and nurses. They have been pioneers in PGHD and use secure electronic messaging to assist patients to raise queries, request clarification, report on adverse effects, inquire about their tests and investigations and also other concerns and issues.[14],[15],[16]

Incorporation of PGHD permits health problems to be closely monitored without worrying about issues such as traffic blocks, parking, looking after kids or loss of wages. It follows guidelines developed by the American Medical Association and the American Medical Informatics Association, for electronic communication with patients, that advise physicians to have a mandatory patient–clinician agreement and consent form that is thoroughly discussed and signed by every patient before participating in PGHD generation and transmission.[15],[16]

Physicians review the information entered by the patients and HIPAA-compliant software integrates the messages and the concerned physician's answers and records into the patient's electronic health record (EHR). Kaiser has documented a decrease in clinical or outpatient visits, a rise in measurable quality outcomes (at least in primary care) and improved overall patient satisfaction. However, they also provide patients with written prescriptions which may be forgotten or misunderstood if communicated verbally and thus avoids the errors of a telephonic communication.[14],[16]

Group Health

It was established in 1945 and provided coverage and care for about 600,000 people in Washington and Idaho. In January 2017, Washington State regulators endorsed the acquisition of Group Health by Kaiser Permanente resulting in a newly formed non-profit organisation named Group Health Community Foundation.[17],[18] They created an electronic Health Risk Assessment on their portal to collect data on risk assessment from patients.[19],[20] The Health Profile feature of the portal includes questionnaires and a patient summary form which can be updated from time to time depending on the client's wish. Patients can also enter various other information such as demographic data, medical history, functional health status and social circumstances directly into their EHRs as well.[16],[19]

A member of the clinical team reviews the info submitted as structured data and incorporates it into the EHR. Thus, the integrated data in EHRs delivered instant prompts and actionable information to the concerned physician and healthcare team. Studies have revealed that this helped in future risk assessment and identification of health issues requiring immediate attention. Evidence suggests that Health Profile reinforced patient–provider relationships by encouraging the mutual transfer of information and understanding.[16],[19],[20]

Dartmouth Hitchcock Spine Centre

It is New Hampshire's largest private employer and lone academic health system which caters to a population of 1.9 million patients and provides access to more than 1800 healthcare providers. It was named the number one hospital in New Hampshire by U.S. News and World Report for the year 2021 and felicitated for great performance in nine clinical arenas, procedures and conditions.[16],[21],[22]

They collect data from patients in a structured format before every visit which enables them to measure the clients' health status and their expectations for quality treatment. The healthcare providers utilise data to plan individualised need-based care for the clients and build shared decision-making based on needs and preferences.[16],[23] The collected data are accumulated and clubbed to evaluate the effect of treatments on the patient over time and also provide vital statistics for population health and quality of life. Research evidence has depicted a high rating for the PGHD system of the organisation by both providers and clinicians. Patients have reported better satisfaction and providers deemed it necessary for both follow-up and evaluation.

Geisinger Health System

It is a regional healthcare provider located in Danville, Pennsylvania. It provides healthcare services to over 3 million patients in 45 counties. In a remarkable-funded pilot project that Geisinger conducted, clients accessed their medications through the patient portal and gave feedback to their providers online before the clinical visit.[16],[23],[24] They also entered the changes in frequency, dosage, newly added or discontinued medications and any other queries they wanted. Their pharmacist gathered the data and followed up with the patient telephonically or through secure messaging if required. They also updated the medication in EHRs and alerted the patient's provider citing the need and source of modifications done. The study findings also revealed that patients liked to provide feedback on their medication information and believed that it enabled them to keep track of their medications efficaciously.[16],[25],[26] Patients conjointly appreciated the improved communication with their physicians during the clinical visits. Providers figured out that medication compliance was improved with substantial time savings and the information provided by patients was beneficial and accurate.

Project health design

It is a country-wide initiative in the United States designed to stimulate innovation in personal health records (PHRs). With the help of the Robert Wood Johnson Foundation, they funded projects to demonstrate ways to improve clients' health and well-being by assisting them in capturing understanding and interpreting information concerning observations of daily living (ODL).[16],[27],[28]

Each of the project teams worked with clinical providers and patients to gather data related to ODLs for their target client population. They analysed and interpreted this information to extract clinically vital data and then utilise the info to provide feedback to patients for improving their quality of life. They helped patients to integrate this information into their clinical progress by sharing it with members of their clinical care team.[16],[28] Two such funded projects by them worth mentioning are:

  • The BreathEasy app: It was developed by RTI International and Virginia Commonwealth University for asthmatic patients to enhance their self-monitoring. ODL data were gathered to make lifestyle modifications and changes in treatment regimens for the effective management of asthma symptoms[16],[28],[29]
  • Estrellita: This app was developed by the University of California, Irvine, for collecting ODL data on high-risk infants. The app allowed the primary caregivers to easily interact with the healthcare team boosting the quality of care and communication. Additionally, caregivers were also able to track clinical appointments and providers were inspired to review the ODL information and raise queries throughout appointments.[16],[30],[31]


Another such revolutionary app is No More Clipboard (NMC). It is a commercialised platform for electronic PHRs that enable clients to share demographic and clinical info and enhanced communication through secure messaging. NMC partnered with a 24-physician cardiology practice as part of an ONC Challenge Grant, whereby an interoperable PHR was offered to 200 cardiology patients and included a Health Diary for entering key health data such as blood pressure and heart rate.[16],[32],[33]

Results revealed increased scores for the Patient Activation Measure, which measures patient knowledge, skill and confidence for self-management. Patients played a vital role in handling their health, enhancing knowledge and confidence and maintaining desirable health behaviours. It also enabled patients to play an active role in recognising errors in their health records (if any) and alerting the providers to make necessary changes.[32],[33],[34]

These institutions globally have incorporated PGHD successfully into their healthcare systems. The research pieces of evidence on PGHD also suggest that patients are progressively engaged in their health and willing to track and monitor their health status. With the advancements in information technology, particularly smartphones, that have a variety of innovative functionalities or apps addressing various health measures, it becomes easy to incorporate PGHD into the healthcare system.[16],[35]


  Benefits and Precedence of Patient-Generated Health Data Top


Undoubtedly, the impact of mobile technology on our day-to-day lives is growing every day. Today smartphones and mobile apps have become an integral part of daily life making it easy and convenient to perform various activities such as surfing for news, travel information, banking, shopping, communicating apart from playing games and watching movies and videos. The wearable health device market is predicted to expand to over 10 billion devices by 2025 with better quality and increased availability and affordability. The userbase for people using a smartphone is globally projected to exceed 3.8 billion in 2021.[36],[37]

The increasing ubiquity of activity trackers worn on the wrist with better AI technology has lately caught up with research-grade devices in terms of data accuracy. Pedometers and accelerometers can help detect and measure a variety of physical activities such as walking, jogging, climbing up and down stairs, so remote observation using accelerometers may well be used clinically to encourage physical activity amongst patients with chronic health problems or even sedentary lifestyles.[37],[38],[39]

PGHD aids in ubiquitously monitoring patients in real-life scenarios to generate an improved holistic approach to the healthcare needs of the patient. It ensures continual, real-time monitoring since a major part of the clients' life is spent outside the hospital setting Therefore it has better coverage than intermittent or infrequent monitoring of patients which usually occurs in routine clinical visits presenting only a snapshot of the patient's health.[38],[39],[40]

PGHD can improve efficiencies by assorting the data gathered before the patient comes for hospital visits, for example, the review of systems via patient portals, making it both economic and efficient for both the provider and the client. PGHD not only solely strengthens bidirectional communication, but also it ensures the availability of healthcare facilities to the more vulnerable sections of the society such as women, children and the elderly living in remote areas. Many research studies have documented the potential benefit of PGHD in refining patient satisfaction, symptomatic management and supportive therapies and clinical outcomes.[41],[42],[43]


  Threats and Concerns for Merger of Patient-Generated Health Data into the System Top


The other side of the coin as evident is that PGHD carries with it a throng of concerns for both the providers and patients. Surprisingly, there is still restricted and inadequate use of the large database of PGHD in the clinical practice. The slow acceptance in unleashing the potential for PGHD and its usage may be due to reasons such as security and privacy concerns, workflow issues, standardisation and interoperability of devices/sensors and software availability.[44]

Provider concerns

Some of the issues related to PGHD for healthcare providers are information overload from the data surge, its usefulness and quality, workload issues and accountabilities which may occur due to lack of proper and timely review and the imminent economic burden. The supplementary time and resources essential for efficient review and management of PGHD could outweigh the benefits lingering though reimbursement models are being brought into line for enhancing remote monitoring to tackle these concerns.[16],[45],[46]

Workflow issues

Certain data flow issues exist in the PGHD system like who will be accountable for client information and review of data generated ,what will be the frequency or intervals for feeding or reviewing the data entered and through which mode. Despite many research studies, it is still explicit whether PGHDs are effective for continuous observation or definite patient populations or settings.[16],[47],[48]

Data inaccuracies

Unfortunately, still some uncertainty prevails on the types of PGHD significant for self-monitoring and whether these are agreeable by providers also as the most vital data. However, these concerns are being actively trailed through research studies for generating evidence-based practices to make PGHD adoptable into the healthcare system.

Interoperability

The non-existence or lack of global or national standards for both PGHD and interoperability of devices is an additional growing concern within the IT sector. Although many providers have structured protocols that enable connectivity between sources, many healthcare devices like the Fitbit still use trademarked architecture, which makes interoperability difficult as the patients may have multiple devices. The industry standards organisations such as HL7 and ONC are energetically trying to solve these issues.[16],[49],[50],[51]

Privacy breaches and security issues

The concerns about privacy and security of data are some latent barriers for PGHD. All those involved especially the patients yearn for assurance that the data will be handled for their care only and only by authenticated healthcare professionals, whereas the providers desire that data are accurate and reliable. Clients need the locus of control on PGHD to rest solely with them, also providing the liberty to choose who has the authorisation to have a glance or access to their data. They also need to know the clear pathway of sharing data with other providers (if required). Another vital concern that is critical in the clinical scenario is the data provenance and its secure transmission from the patient to EHRs.[16],[52],[53],[54],[55],[56]


  Opportunities and the Way Ahead Top


The amalgamation of wearable device data and PROs into the clinical record is being initiated by EHRs, which can be siphoned directly into research databases. The key EHR vendors such as EPIC, CERNER, CARE CLOUD, Athenahealth, GE Centricity, eClinicalWorks, NextGen and Allscripts have existing or planned collaboration with Apple's HealthKit application; it collects and integrates multiple sources of PGHD into a single dashboard for accessing health and fitness data. They also provide facilities to direct PRO questionnaires to patients through the patient portal.[57],[58],[59],[60] There should be well-structured data fields for entering PGHD and for documenting ITS review, written pathways or protocols for appropriate actions to be taken for managing symptoms or toxicities to help improve the quality of EHRs.[61]

Intellectual filtering and summarisation are required for the effective utilisation of PGHD. Considering the deluge of data, it becomes imperative to convert the raw data entered into purposeful, useful and meaningful information. The use of technological advancements to segregate the available data into different categories depending on the priority of healthcare needs is deemed essential for effective clinical decision-making. Mechanisms and software should be developed to identify patients requiring instant attention due to worsening clinical conditions with customizable alarm systems that are easily operable. Substantive software programming is required to recognise patients with the potential risk of emergent complications.[59],[61],[62]

PGHD continues to be a budding arena and is continuously evolving with efforts to resolve the existing operational obstacles and alternative considerations. Although PGHD is one of the most helpful tools in improving clinical outcomes and the quality of healthcare, there exists a substantial gap between knowledge and practice, especially regarding the usability of PGHD by both patients and providers. Exploratory research is recommended to identify the type of PGHD which is most efficient in refining health outcomes and excellence of care at both individual and community levels.[60],[62],[63]

Randomised control trials are desirable to scrutinise whether PGHD improves shared decision-making and long-term clinical outcomes. Studies ought to focus specifically on optimal timing, frequency of data collection and integration into the clinical pathways. Handling of missing data and incompliance to wear devices during continuous monitoring are important issues to be addressed through research analysis. [63, 64] Evidence from global reports on target population has shown that smartphone owners and those buying wearable devices are usually younger and belong to better socioeconomic status. Therefore, another major concern is the health disparities that may result due to reliance on PGHD from such devices.

Despite all the issues and concerns that may arise due to the integration of PGHD, the silver lining is the fact that numerous research efforts are on the way to explore various strategies of data aggregation, primarily focused on clinical scenarios. With the successful incorporation of artificial intelligence and advanced information technology, we can envisage the prediction of diseases through sensors before it harms the body or a complete transformation of the healthcare delivery system at the touch of our fingers.


  Conclusion Top


This review intended to sum up the data from the perspectives of both providers and clients and tries to promote a better understanding of barriers to implementation and incorporation of PGHD into clinical practice. Data from this narrative may be useful in developing protocols to improve the incorporation of PGHD by taking into consideration the perceived needs of all the stakeholders.

The need of the hour is novel and ground-breaking systems like PGHD to enhance quality holistic care to society at large and substitute for the deficient healthcare personnel and infrastructure. If utilised appropriately through a structured approach, PGHD can provide highly sensitive, specific and culturally congruent care with easy accessibility, reduced healthcare costs and efficient productivity. The world seems moving closer to the high-tech high-touch approach to quality healthcare for all, through PGHD. Despite the extent of evidence suggesting greater patient–physician communication; additional research needs to be steered towards exploring the perspectives of clients and providers and to evidently assess how PGHD affects patient–provider relationships and identify strategies and systems to expand partnerships using these data.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
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