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Patient access to clinical information represents a means to improve the transparency and delivery of health care as well as interactions between patients and health care providers. We examine the movement toward augmenting patient access to clinical information using technology. Our analysis focuses on “Blue Button,” a tool that many health care organizations are implementing as part of their Web-based patient portals.
We present a framework for evaluating the effects that technology-assisted access to clinical information may have on stakeholder experiences, processes of care, and health outcomes.
A case study of the United States Department of Veterans Affairs' (VA) efforts to make increasing amounts of clinical information available to patients through Blue Button. Drawing on established collaborative relationships with researchers, clinicians, and operational partners who are engaged in the VA’s ongoing implementation and evaluation efforts related to Blue Button, we assessed existing evidence and organizational practices through key informant interviews, review of documents and other available materials, and an environmental scan of published literature and the websites of other health care organizations.
Technology-assisted access to clinical information represents a significant advance for VA patients and marks a significant change for the VA as an organization. Evaluations of Blue Button should (1) consider both processes of care and outcomes, (2) clearly define constructs of focus, (3) examine influencing factors related to the patient population and clinical context, and (4) identify potential unintended consequences.
The proposed framework can serve as a roadmap to guide subsequent research and evaluation of technology-assisted patient access to clinical information. To that end, we offer a series of related recommendations.
Patient engagement is associated with desirable outcomes, including increased satisfaction with care, improved well-being, and better medical adherence [
Historical policies, workflows, and technologies have often limited patient access to clinical information. Traditionally, file cabinets, and later, electronic health records (EHRs), were the domains of clinical information, secure vaults that were inaccessible to patients except upon written request, and typically after a delay and the payment of requisite fees. Today, however, many public and private health care organizations are exploring ways to facilitate patient access to and exchange of personal health information, including clinical information. Policies are changing, and legislation has been signed into law to support increased patient access to clinical information [
In this paper, we examine the movement toward augmenting patient access to clinical information-using technology. Our analysis focuses on “Blue Button,” a tool that many health care organizations are implementing as part of their Web-based patient portals. The Blue Button concept originated at a January 2010 meeting of the Markle Foundation Consumer Empowerment Workgroup [
Using the VA as a case study, we characterize the experiences that one organization has had as it mobilized to make increasing amounts of clinical information available to its patients. Building from this foundation, we present a framework to evaluate the effects that access to clinical information may have on stakeholder experiences, processes of care, and outcomes. We conclude with a series of recommendations to guide future research in this rapidly evolving area.
Facilitating patient access to clinical information has been discussed as a means to improve the transparency and delivery of care as well as interactions between patients and health care providers [
The movement toward making clinical information more accessible to patients has been framed as part of broader efforts to promote effective health information exchange across organizations [
Most recently, the “Open Notes” Project provided a new assessment of outcomes associated with patient access to clinical information. Studying primary care practices at three medical facilities (Beth Israel Deaconess Medical Center in Massachusetts, Geisinger Health System in Pennsylvania, and Harborview Medical Center in Washington), DelBanco and colleagues [
Drawing on established collaborative relationships with researchers, clinicians, and operational partners, we examined the efforts underway in the VA to make increasing amounts of clinical information available to patients through Blue Button. We assessed existing evidence and organizational practices through key informant interviews with VA researchers and representatives from relevant VA program offices, reviewed historical documents, usage reports, data documentation, and other materials describing Blue Button, and conducted an environmental scan of the published literature and websites of other health care organizations to contextualize our findings.
Veterans using the VA PHR patient portal, My Health
Veterans using VA Blue Button can choose to view and print their information from a Web browser window, or download their information in portable document format (PDF), as a plain text file, or as a Blue Button text file intended to support use with other electronic applications. Veterans can tailor the Blue Button file by selecting specific date ranges and/or specifying the types of information that they wish to include.
Expansions of the clinical information available through VA Blue Button have been released incrementally. Some information is accessible after a brief delay to allow time for health care providers to communicate directly with patients, for example to discuss abnormal test results. In January 2013, the VA joined the OpenNotes Initiative, sponsored by the Robert Wood Johnson foundation [
Personal health information, including clinical information available through VA Blue Button.
Type of information | Description | When available | Date range | |
|
||||
|
Activity journal | Daily exercise and activity log | Immediately | User selected |
|
Allergies | History of allergies including severity, reaction, diagnosis, and comments | Immediately | All |
|
Demographics | Personal information entered during account registration or profile updates, emergency contacts | Immediately | All |
|
Family health history | Family member’s health history and events that may affect health | Immediately | All |
|
Food journal | Daily food intake to monitor diet or control weight | Immediately | User selected |
|
Health care providers | Information pertaining to caregivers and health care providers | Immediately | All |
|
Health insurance | Information about health insurance coverage and policies | Immediately | All |
|
Immunizations | Immunization date, method used, and any reactions | Immediately | All |
|
Labs and tests | Information about lab tests performed and test results | Immediately | User selected |
|
Medical events | History of illnesses, accidents, or other events | Immediately | All |
|
Medications and supplements | Medications, over-the-counter drugs, herbals, and supplements | Immediately | All |
|
Military health history | Military health history, potential exposures, and treatments | Immediately | All |
|
My goals (current goals and completed goals) | Set individualized, personally relevant recovery goals and track progress toward achieving these goals | Immediately | Current goals: all completed goals: user selected |
|
Treatment facilities | Medical treatment facilities and locations | Immediately | All |
|
Vitals and readings | Common health measures (eg, blood pressure, blood sugar, pain, etc.) | Immediately | User selected |
|
||||
|
VA allergiesb | Recorded allergies and adverse reactions | Immediately | All |
|
VA admissions and dischargesb | Admissions and discharges including comprehensive discharge summaries | Discharge Summary only: 3 days after completed | User selected |
|
VA appointmentsb | Two years past and all future VA appointment details | Immediately | All |
|
VA demographicsb | Demographic information from VA treating facilities in the last 3 years | Immediately | All |
|
VA electrocardiogram (EKG) reportsb | A list of EKG studies performed at VA treating facilities | Immediately | User selected |
|
VA immunizationsb | History of recorded immunizations along with any reactions | Immediately | All |
|
VA laboratory resultsb | Results of chemistry, hematology, and microbiology lab tests | 3 days after results verified | User selected |
|
VA medication history | History of VA medication refills | Immediately | User selected |
|
VA notesb | All completed progress notes from January 1, 2013 forward | 3 days after Note completed | User selected |
|
VA pathology reportsb | Surgical pathology, cytology, and electron microscopy study results | 14 days after report completed | User selected |
|
VA problem listb | List of active health issues and conditions | 3 days after entry | All |
|
VA radiology reportsb | Results of radiology and other imaging studies | 3 days after report verified | User selected |
|
VA vitals and readingsb | Blood pressure, pulse, body temperature, weight, etc. | Immediately | User selected |
|
VA wellness remindersb | Patient friendly clinical reminders for preventive services | Immediately | All |
|
||||
|
Military service informationb | Historical record of military service including position and rank codes | Immediately | All |
aElectronic health record
bRequires My Health
VA Blue Button download results screen and blue button file.
Through January, 2014, there were 2,127,462 VA patient registrants with the My Health
Building on existing models used to inform the evaluation of quality and that emphasize structures, processes, and outcomes at different levels of analysis [
An evaluation framework for Blue Button.
A central component of personal health information management is “exchanging” or sharing information in an effort to support health-related tasks, a practice that commonly involves a patient’s informal caregivers (eg, spouses/partners, family members, and others) and their health care providers (eg, primary care doctors, specialists, nurses, and other professionals across health care systems). Previous research has shown that personal health information is often accessed and managed with sharing in mind, and that the exchange of information is performed through multiple means, including paper-based systems and electronic tools [
Stakeholders encompass those who use and/or are affected by the clinical information accessed through Blue Button. The proposed framework focuses on patients and three additional stakeholder groups: informal caregivers, health care providers from a patient’s primary health care organization, and other health care providers that a patient may see. As depicted in
Patients can use Blue Button to access different kinds of clinical information either alone or in collaboration with others. They may also share that information with their informal caregivers and health care providers to support various processes of care and associated health behaviors. The knowledge, attitudes, and beliefs that all stakeholders have about Blue Button influence how, why, and if, it is used initially, as well as whether it is adopted and used more routinely.
In the case of the VA, the types of clinical information available through Blue Button were summarized in
We propose three broad processes of care and associated health behaviors that can be influenced by Blue Button: (1) communication, (2) self-management, and (3) coordination of care. Communication refers to the strategies used to inform and influence individual and community decisions that affect health [
The processes of care described above can influence both health care quality and health outcomes. The Institute of Medicine previously identified six aims for health care improvement, which have since been framed as domains of quality in patient care [
The authors of this paper engaged in a structured exercise to identify a thorough set of patient and health services constructs, based on the types of information available through VA Blue Button, which could be used in evaluation efforts. A spreadsheet was distributed that included a list of all VA Blue Button information types (spreadsheet rows) as well as the stakeholder groups of patients, health care providers, and informal caregivers (spreadsheet columns) along with these instructions: “Think of ways that patients, health care providers, and informal caregivers could use the following types of information available through VA Blue Button and in so doing, also reflect on the information required to understand the potential impact of each use.” Each author documented their ideas in their own copy of the spreadsheet, all of which were then collected, reviewed, and deduplicated. The resulting constructs are listed in
By context of care, we mean the environment or setting in which patients seek and receive health care services [
Constructs relevant to processes of care and outcomes.
Constructs | Stakeholder | ||
Patient | Informal caregiver | Health care provider | |
Adverse drug interactions | X |
|
X |
Allergic events | X |
|
X |
Appointment attendance | X |
|
X |
Appropriateness of prescriptions | X |
|
X |
Caregiver burden |
|
X |
|
Caregiver capacity to support patient | X | X |
|
Cholesterol management | X |
|
X |
Cross-system information sharing |
|
|
X |
Cross-system medication reconciliation |
|
|
X |
Duplicate services | X |
|
X |
Duration/frequency of appointments | X |
|
X |
Extent of physical activity | X |
|
|
Glucose management | X |
|
X |
Medical record accuracy | X |
|
X |
Medical record comprehensiveness | X |
|
X |
Nutrition management | X |
|
X |
Patient activation | X |
|
|
Patient attrition | X |
|
X |
Patient–caregiver collaboration | X | X |
|
Patient health perceptions | X |
|
X |
Patient–provider communication | X |
|
X |
Patient self-monitoring | X |
|
|
Patient self-understanding | X |
|
|
Preventative self-care practices | X |
|
|
Provider time management |
|
|
X |
Provider workload management |
|
|
X |
Quality of care plans | X | X | X |
Satisfaction with health care system | X | X | X |
Satisfaction with provider–patient interaction | X |
|
X |
Service usage (emergency, telephone, urgent care) | X |
|
X |
Shared decision-making | X |
|
X |
Shared goal setting | X |
|
X |
Timeliness of medication refills | X |
|
X |
Weight management | X |
|
X |
Enhancing patient access to clinical information represents a paradigm shift for health care; yet, despite the potential implications of this transformation, there has been little discussion regarding how to systematically evaluate these changes. At present, only isolated reports suggest that patient portals can enhance patients’ access to information, and, in so doing, extend their ability to communicate with providers, support their self-management efforts, and improve coordination of services [
Although seemingly novel at present, Blue Button fits within an expanding array of patient-facing technologies that are now being implemented across health care organizations. Beyond those that are already available, the years ahead will see the proliferation of other patient portal features, mobile applications, and other technologies; all designed to support access to, sharing, and management of clinical information. It is unlikely that patients would choose to use Blue Button to the exclusion of other available technologies; on the contrary, it is more likely that they would use Blue Button in concert with them. In the case of VA, for example, one can easily envision how increased access to clinical information through Blue Button could spur increases in the number of messages exchanged between patients and health care providers using the secure messaging feature of the My Health
In order to rigorously assess the influence of Blue Button on processes of care and outcomes, health care organizations must establish a critical mass of stakeholders who use it. As described earlier, analyzing the independent impact of Blue Button will likely require large, well-powered studies. For this reason, steps must be taken to ensure that patients, their informal caregivers, and their health care providers are using Blue Button to its fullest. We suggest an early investment in research to identify best practices for raising awareness about Blue Button, educating stakeholders about its potential to improve aspects of care, and determining effective strategies for promoting its adoption and sustained use. Later research could then address how best to expand reach of Blue Button to other segments of a patient population, including those with limited Internet access and/or computer skills.
If rigorous evaluations are to be conducted, health care organizations must gather data on use of Blue Button and make those data available for evaluation purposes. Although revisions have recently been made, the policies and terms of use for VA’s My Health
Although the tendency is to evaluate the impact of a novel intervention on outcomes, focusing initial evaluations of Blue Button on processes of care will further our understanding of the role of context and other intervening factors, and reduce the likelihood of producing inaccurate or misleading findings. With this foundation, evaluations can move further along the causal pathway toward outcomes of interest. To that end, we suggest that early evaluations focus on two areas: (1) changes in efficiencies of care, and (2) patient–provider communication during in-person, “brick-and-mortar” clinic visits. For example, reductions in duplicate testing represent a firm example of potential increased efficiencies gained through Blue Button use. Similarly, patients who share clinical information accessed through Blue Button with their health care providers may experience improvements in the accuracy and meaningfulness of their communication.
Also important to acknowledge is that implementation of innovative tools like Blue Button can have unintended consequences. One can speculate, for example, how the interpretation of a prescribed medication list accessed through Blue Button could be difficult for patients and health care providers who do not have access to the various clinical notes that contextualize the medications within the patient trajectory. There may be information missing from a Blue Button report due to the information or timeframe selected by the patient, or because of technical constraints. Exchanging clinical information accessed through Blue Button could potentially result in longer visits as patients present their information and expect health care providers to review it. Moreover, some patients may perceive that they have less privacy and control in light of the ready information access and sharing that Blue Button facilitates. Early evaluations can shed light on such potential unintended consequences and suggest ways to address them through system redesign efforts or targeted interventions
Implementation of Blue Button represents an early step by health care organizations to support patient access to and exchange of clinical information. A growing body of evidence indicates that the management of personal health information is, in many cases, a collaborative process that involves not only patients, but a variety of other stakeholders [
As different stakeholders use Blue Button, it is likely that other changes in experience and practice will transpire. Evaluating this cascade of change will be critical. As noted earlier, some patients may find clinical information confusing, and realizing the positive benefits of Blue Button may require additional supportive technologies, translating clinical text into patient terms, providing links to tailored patient education information, and supporting shared decision-making based on the clinical information provided. Thus, in addition to the evaluations we suggest here, considerable basic health informatics research is needed.
We are just now realizing what was articulated in the medical literature nearly four decades ago [
electronic health records
electrocardiogram
portable document format
personal health records
United States Department of Veterans Affairs
extensible markup language
This work was funded by the Veterans and Consumers Health Informatics Office of the United States Department of Veterans Affairs. The authors would also like to acknowledge the critical role played by Carolyn Turvey, PhD, in the assessment of existing evidence presented in this paper, and to the formulation of the corresponding framework. Without Dr Turvey’s contributions, these ideas would not have come to fruition.
None declared.