Implementation, adoption and use of intelligent EHR’s, PHR’s and the implications in the light of patient empowerment

Information is the basis of modern health care and is essential to managing one’s health, preventing medical errors and assessing problems. Gathering together a person’s medical history of procedures and diagnoses, medications and therapies, lab test results, family history, diet and exercise habits and personal information allow for the most efficient, effective and productive health care interactions. Despite the advances in technology driving the breakthroughs in medical treatment this kind of information is scattered amongst the patient’s many health car providers and health institutions (hospitals, treatment centres and laboratories) they see during their lives. Storage is often on scraps of paper, individual memories and random files on personal computers. Most health information is unstructured data and stored in static and flat paper folders and files, lining physician office walls. At present there is no unified system or standards enabling a central, secure and easily accessible repository for one’s personal health information.

Often a health care visit entails new (and often duplicate) forms to fill out, new (and often duplicate) lab or other diagnostic tests to run and new (and often duplicate) conversations reviewing one’s personal health history – typically relying on memory alone. Accessing an accurate and comprehensive medical history is currently an enormous challenge. People need more effective tools to help manage their lives and health care.

This same lack of an effective and coordinated Health Information Technology leads to inadequate communication between various health care stakeholders (physicians, patients, hospitals, emergency rooms etc), difficulty in monitoring and evaluating patient progress and a lack of effective compliance monitoring/motivation.

Worldwide there is a health care revolution occurring – “Patient Empowerment”. People are realizing they have the ability to take ownership of their health futures. The Internet is the key enabler of this exciting change. Web 2.0 and Health 2.0 tools are giving patients and care givers real time access to the latest medical information and discoveries, social media interactions, quality ratings of providers, telemedicine, treatment options and efficient communication options.

In a broader sense, these new tools not only allow people to pay more attention to scientific discoveries in real time and understanding the impact of them but also to see how the can have an impact in bringing the discoveries about.

Not too long ago when someone got sick they went to their Doctor, listened to what was wrong and then went to the pharmacy to have a prescription filled. It was unheard of to question the advice of the Physician; after all they went to medical school. People did not feel the need to learn about their bodies or health and even if they did the access to the information was reserved for the “professionals”.

Today it has all changed. No longer is the individual willing to let his or her health remain in the total control of someone else. In 2008, when health issues occurred, online consumers in Europe and the United States were most likely to FIRST turn to the Internet before going to their Doctor. Almost 90% of European and 70% of American Internet users have looked online for health information.

Today it is common for patients to go to their Doctor appointment armed with printouts from the Internet and extracts from books about their symptoms and even suggesting treatment options. The use of the Internet for healthcare is arguably one of the most important cultural medical revolutions of the past century, mediated and driven by technology.

“In the 21st century, people need—and want—to be actively involved in managing their health and health care. To take charge, they need access to a range of information and tools to help them understand and use it. By providing tools and systems that allow this information to be shared easily between patients and providers, we believe the users will experience a different level of engagement with their health and the health care system. The result might well be better patient-provider relationships and better clinical outcomes.”

One of the key missing pieces in achieving effective patient involvement and management of their health care is a portable, accessible, secure, comprehensive data base record of their health and medical information.

The originally conceived health record was a static flat paper file, created, owned and maintained by Physicians to document medical information in a clinical setting. It was designed to meet the needs of providers, largely notes by Physicians on what they thought was important. Patients did not have access to these files nor were the files very portable.

In recent years a small number of providers (Physicians and hospitals) in the United States (slightly more in Europe) have shifted from these paper-based records to electronic health records (EHRs). These initial EHRs were digitized versions of the paper records – more available to the provider but not to the patient and still based on bits of information the provider decided was relevant and because of a lack of information technology standards, still not very portable. These initial EHRs did not coordinate very well with other medical access points (labs, ER, other physicians etc) thus limiting the quality and usefulness of the information. These EHR software systems typically record mostly the legally mandated notes on the care provided by clinicians to patients. The purpose can be thought of as an electronic record of patient encounters that can streamline workflow, create cost efficiencies, and improve quality and safety.

As the EHR concept evolves we find it becoming a longitudinal collection of patient health information. This digital record can be shared across different health care settings through networked enterprise systems. These records may contain data in comprehensive or summary form and can include demographics, medical history, medication and allergies, immunization status, lab test results, radiology images and billing information. As mentioned earlier, EHRs are maintained by the originating institution (physician’s office, clinic or hospital).

In the United States President Obama has called for all Americans to have EHRs by 2014. Obama said he would allocate $50 billion over five years to support the adoption of standards-based health IT systems. He added, "This will cut waste, eliminate red tape and reduce the need to repeat expensive medical tests. But it won't just save billions of dollars and thousands of jobs, it will save lives by reducing the deadly but preventable medical errors that pervade our health care system."

EHRs promise to reduce health care costs, improve quality of care and promote evidence-based medicine, which can accelerate the knowledge of effective medical practice.

While these are very beneficial outcomes of increased EHR adoption a major missing piece remains. EHRs leave the patient out of the equation and do not foster increased patient empowerment and involvement in their health.

A more recent evolution/revolution of the EHR that addresses this shortcoming is now being called a Personal Health Record (PHR). The PHR combines the information in an EHR with patient user generated data along with total portability and increased accessibility. For purposes of this paper we will use the term PHR as we want to show the impact of electronic health records on patient empowerment. In a truly integrated system, the PHR acts as a portal to all the data in myriad EHRs.

The PHR is a secure web based set of software tools that allows people to access, contribute to and coordinate their lifelong health and medical information and make parts of it available to those who need it.

This comprehensive and integrated health information can include user-generated information such as symptoms and medical use, information from their physicians (EHRs) and other care providers, information from pharmacies, insurance companies and real time tracking of conditions and treatment effectiveness. The PHR can be accessed over the Internet at any time and from any location. It can be used as a communications hub – sending and receiving emails from providers, transfer information to specialists and access online self-help tools. Doctors, nurses, emergency room staff or family members can access portions as necessary. It is the central repository of a person’s entire medical and health history. The PHR helps an individual take control over his or her own health information.

PHRs will enable patients to become more engaged in their care and allow other authorized individuals to access health and medical information that was not previously available, difficult to access electronically or costly to obtain. These PHR systems could have a very positive impact on healthcare system efficiency and clinical processes, thus resulting in considerable cost savings. It is estimated that in the United States, PHRs will save $21 billion annually.

Seven Attributes of a Personal Health Record

1. Each person controls his or her own PHR.
2. PHRs contain information from one’s entire lifetime.
3. PHRs contain information from all healthcare providers and institutions.
4. PHRs are accessible from any place at any time.
5. PHRs are private and secure.
6. PHRs are transparent, individuals can see who entered each piece of information, where it was transferred from and who has viewed it.
7. PHRs permit easy exchange of information with other health systems and professionals.

The PHR may also include additional valuable information such as:

• Health status parameters, such as exercise, nutrition and spiritual well being.
• Periodic risk assessment survey results
• Decision support tools, risk management and professional advice.
• Consumer-focused health information and education (pushed from various resources).
• Benefits and financial management resources.
• Environmental exposure and community health monitoring information
• Optional living will and organ donation preferences.
• Personalized genomic information
• Population disease data

The Internet based system allows information to be accessed and edited via a secure web browser on a PC or smart phone mobile device. The PHR becomes interactive – evolving with real time medical literature and updated automatically with current medical history of the patient and his or her family from either the patient or from all his or her providers.

Utilizing PHRs, patients can manage their healthcare through alerts and reminders, enhancing compliance with medications and scheduled appointments. Actively involving patients in their care will improve outcomes and overall satisfaction with the health care system. As providers utilize PHR based pre-encounter questionnaires that collect more complete and accurate information they can make more informed clinical decisions.

A survey by the Deloitte Center for Health Solutions finds that that 3 of 4 American consumers want their doctors to provide online access to an integrated medical record. 3 in 4 also wanted expanded use of online tools that would reduce need for office visits and allow individuals to be more active in their care. The survey also found that a majority of consumers would maintain a PHR if provided easy to use software.

We have previously used the terms Web 2.0 and Health 2.0 to define a set of new web based tools that allow for increased interactivity and social media. In the same vein we would like to use Patient 2.0 Empowerment. Health 2.0 is the transition to personal, participatory health care. “Everyone is invited to see what is happening in their own care and in the health care system in general, to add their ideas, and to make it better every day.”

Patient 2.0 empowerment is the active participation of the patient in his or her health care utilizing the interactivity of information and connectivity as contained in their PHR (remembering that the PHR is also a portal to the EHR). By becoming informed and engaged patients and partnering with their health care providers, they ultimately become empowered to improve their quality of life and health care. The PHR is a necessary part of this process. Optimal outcomes of health care are achieved when patients become more active participants in the health care process. PHRs provide them the information and tools to become more active participants and makes this a feasible reality.

Patients are realizing that they can improve their medical outcomes by taking responsibility for their own healthcare decisions. The PHR can help to empower patients by giving them a sense of ownership of their care as well as improving communications with clinicians. PHRs are being seen as a tool to support healthy lifestyles and disease management.

Patient empowerment provides patients with the potential to exercise power. The exercise of patient power, may improve health outcomes. The PHR represents an important mechanism in patient empowerment by providing patients more control, better access and better communication.

One of the great challenges as PHRs increase in acceptance and use is how to design systems that allow for integration and compatibility across platforms.

Integration will necessarily include two-way communication between the individual’s PHR with EHRs residing with their Health Care Providers, Private and Governmental Institutions, other Health Care service providers (i.e. Labs, Pharmacies), Health Portals and Insurance Companies.

Given the complexity of the systems and the sheer number of stakeholders this challenge will require a high degree of commitment and resources to properly implement.