PERSONAL HEALTH RECORDSA Facilitated Discussion by Mark Silverberg

HSCI 2109 - Trends and Innovations in Healthcare - GW Spring 2013

1Hi everyone, thanks for taking a look at my presentation on the advent and use of personal health records. I’m excited to present my findings from researching this topic and I look forward to the your thoughts and comments about PHRs and how it is related to innovation in health care.

A quick note about the graphic on this cover slide: it is a rendition of what a personal health record could look like. It was created by me and my startup (myself plus two nurse informaticists) as part of the HHS/ONC (Office of the National Coordinator for Health IT) Health Design Challenge. There is a live version at http://hdc.socialhealthinsights.com/ if you would like to interact with it. I’m including it on this slide as a visual of what a PHR *could* look like.

TOPIC INTRODUCTION

Personal Health Records (PHRs) are an Innovation in Health Care• The topic of PHRs is a perfect example of how information technology has the

potential to enrich the health care experience• PHRs have the potential to catalyze patient engagement which has been shown

to cut costs and improve outcomes through both preventative medicine and chronic disease management (PCMH model)

Electronic Health Record Personal Health Record

Definition

Maintained by

contains the encounter data between a health provider

and the patient

includes patient information they have received from their providers plus data they enter

themselves

Provider or Payer Patient

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Topic Definition• Let’s take a moment to define what exactly a PHR is and how it differs from an electronic health record (EHR). There are many ways

integrate an EHR and PHR, but that will come later. I find it most helpful to first define what an EHR is and then show how a PHR is similar and different.

• EHR: Simply put, an EHR is an information system which contains the encounters and health data collected and produced between a health provider and their patients’s interactions. There are many different EHR vendors and using a certified EHR is an important part of new regulations for providers who want to receive Medicare/Medicaid benefits from the government.. so you can expect almost all providers to be adopting an EHR if they haven’t already done so.

• PHR: A PHR can be thought of as a collection of a patient’s data from their many providers *plus* data they enter themselves. • By definition, an EHR is maintained by the provider and/or their organization (such as the practice or the hospital they belong to)

whereas a PHR is located on a user’s computer or, more recently, the trend is for consumer-oriented companies such as the likes of Microsoft and some providers/payers to provide the patient a separate service for patients to organize their data from several providers.

PHRs as a topic related to innovation in healthcare• PHRs are definitely a topic related to innovation in healthcare.

• PHRs are at the intersection of health and IT. • There has been research that has shown improved patient outcomes and lowered costs due do patient engagement in their own

care which PHRs are a catalyst of.• In addition to promising benefits, like other innovations and trends in health care, PHRs include many challenges which must be kept

in mind when looking to implement the innovation.

KEY STAKEHOLDERS• Patients stand to gain insight into their own health and improved

outcomes if their PHR provides the right functionality. Security breaches would, however, put patients’ own information at risk (however they already at risk due to EHR use which is beyond the patient’s control)

• Providers can benefit by having a more knowledgeable and informed patient. Some providers could see this as a larger burden and more work. Providers can benefit from government incentives in some cases.

Retrieved 4/6/2013 from http://www.deloitte.com/view/en_BE/be/industries/life-sciences-and-health-care/life-sciences-and-health-care-in-belgium/

• Payers benefit when their costs are reduced. PHRs do this by letting patients manage chronic diseases and encouraging preventative measures; may pay for PHRs

• IT service providers can benefit economically from building products and providing services but must comply with security regulations such as HIPAA

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America’s health care system has a lot of stakeholders. The three main buckets are patients, providers, and payers. There are, of course, others such as service providers, consultants, pharmaceuticals, medical device manufacturers, regulators, and the list goes on.

The key stakeholders of PHRs are patients, providers, payers, and information technology service providers such as EHR/PHR companies as well as their supply chain (labor and materials).

Patients have a lot to gain as the concept of the personal health record is centered around keeping track of and gleaning insight from one’s history of health. The largest disadvantage is the risk of security breaches which are inevitable with technology which is conveniently connected to the internet for access, aggregation, and backup. The safest (however less functional PHR) may be one that is on a computer which is not connected to any network.

Providers can benefit from having a better informed patient however this can be cumbersome for the practitioner if the patient is now self-diagnosing and suggesting treatments from “insights” they may have found from their PHR. As we will see, a lot of research has been done from the provider-side in terms of PHRs and it is not universally welcomed by health care deliverers. Providers may receive financial incentives from the government to enroll their patients into PHR programs with the goal of increasing patient engagement and chronic disease management which ultimately reduces costs for providers.

While payers may end up paying for PHRs for some patients, they can potentially see an increase in profit margins if key expensive and at-risk patients’ outcomes are improved once “prescribed” a PHR regiment.

IT service providers and consultancies which specialize in health information systems have a lot to gain in this established but growing and innovative space. They have many people to which they can offer their services (straight to patient or entice providers/payers to pick up the tab). IT providers will need to be careful to follow all government regulations including the newly updated HIPAA Omnibus rules regarding patient information portability and security.

BARRIERS TO ADOPTIONProviders

• Attitudes including lack of buy-in (Anoshiravani 2011)• Practitioner difficulty with technology (Miller 2004)• High up-front costs for IT (Miller 2004)

Patients• Lack of information, motivation (Goel 2011)• Negative attitudes towards technology, security concerns (Goel 2011)

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While there are many stakeholder groups which should care about and are impacted by PHRs, most barriers to adoption are related to providers and patients. Accordingly, I have listed the top five barriers to PHR adoption by stakeholder group.

ProvidersThough attitudes are expected to change as IT becomes more integrated into health care delivery in the United States, many sources I read cited lack of practitioner (mostly physician but also nurse) buy in as one of the most prevalent barriers to PHR adoption. Some practitioners also cited technology as being a nuisance while others simply did not have the know-how to use EHRs which hinders PHR value and use by patients. Costs were of concern to many providers, especially private physician groups who are struggling to simply implement EHRs.

PatientsOverall sentiment from patients regarding use of PHRs appears to be trending positive however, in some cases, patients are their own barriers to adoption of this innovation. For example, if the patient does not fully understand or see the value in using a PHR, they were found significantly less likely to participate in one. There has been research done and it is not only older patients which do not want to use PHRs: some young and middle-aged patients shy away from PHRs due to the possibilities of their privacy being breached.

FACILITATORS OF PROGRESSTechnology

• Advancements in technology continue to make PHRs more viable through secure data exchange and improved user experience design

Payers• Due to the savings and subsequent improved

profit margin, payers may continue to subsidizePHRs for their patients to encourage healthy(and cost-saving) behavior and choices

Government leverage on providers• Regulations including some Meaningful Use measures require

providers to make patient portals available to patients in order to receive incentives. It is thought this will be the first step to get patients used to managing their care and holistic health online.

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While there are many detractors (barriers) to PHR adoption, there are a number of champions and facilitators of PHRs, making this innovation a dynamic one to watch.

Technology continues to be a driver for innovative progress toward a better PHR experience for patients and their caregivers. Advancements in technology continue to make PHRs less costly to set up and more user-friendly to patients and system administrators.

Payers benefit when they can save money. They can save money if they can find ways to make their beneficiaries healthier. If you follow this line of thinking, it only makes sense that Payers will take on some expense of rolling out PHRs to at least some of their beneficiaries as they realize it can prevent some provider encounters (which are much more expensive than deploying an information system) and help chronically ill patients manage their disease using online tools and facilitated engagements with their provider or payer-provided counselors.

The US government is a type of payer but also regulates much of the health care industry in our country. Since so many patients are beneficiaries of the US government, any requirement they come up with will, in all likelihood, be followed by providers and other payers alike. Accordingly, PHR technology is riding on the coat tails of the government’s Meaningful Use stages which are part of the HITECH act. In brief, it requires providers to make sure (at least) a certain percent of patients engage with them through a patient portal (a type of PHR). These regulations are continuing the innovation of the PHR and helping progress it toward maturity from its current early adopter status in the technology adoption lifecycle.

SUSTAINABILITY & ECONOMICS• A PHR is controlled by a patient but it can be hosted by any trusted party

• Some receive a PHR through their employer, payer, provider, or health club.

• There are free and paid options in the marketplace for patients to choose from. Popular examples include Microsoft HealthVault and NoMoreClipboard.

• Implementation costs for PHRs vary greatly. There are some open-source software packages which can be used to significantly reduce costs.• Providers are economically incentivized by the

government (Center for Medicare and MedicaidServices) to implement EHRs and PHRs.

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As I’ve touched on today, a PHR is *for* and controlled by a patient but it may be hosted, furnished, or subsidized by a payer or provider.

Some people receive a PHR through their employer, insurance payer, provider such as hospital or their primary care physician, or even a health club like gyms or spas. There are also completely free (and paid) options in the marketplace including big players such as Microsoft HealthVault and many startup offerings including NoMoreClipboard.com.

Implementation costs for PHRs vary greatly since functionality and interoperability vary greatly from one PHR to another. There are some free open-source software packages some providers/payers use to lower the costs. Some EHR vendors like Epic and Allscripts include PHR functionality as an add-on to their multi-million dollar systems.

Most recently, with Meaningful Use, providers (hospitals as well as sole and grouped practitioners) are being incentivized to implement patient-engagement elements into their EHRs or choose vendors which have the option to accommodate PHR access by patients.

COST AND BENEFITSFOR INDIVIDUALS AND SOCIETY

• With correctly implemented and supported PHRs, improved health outcomes and reduced costs can be achieved; a few examples include:

• reminding and urging patients to receive preventative medicine such as flu shots and colonoscopies (Lau 2012)

• allow patients to ask medical professionals non-urgent questions without calling or coming into the office (Detmer 2008)

• facilitate chronic disease management using online, mobile, and device-connected tools (Urowitz 2012)

• connect patients to cost-saving telemedicine providers

• A 2008 article from the Journal of the American Health Information Management Association (JAHIMA) noted that “widespread use of PHRs could save the US healthcare industry between $13 and $21 billion a year.”

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Like with many recent innovations in healthcare (ACOs and the PCMH model comes to mind), the goal inherit benefit of PHRs is to empower patients to improve their health and lower costs for them and their payer/providers at the same time.

Said in a quantitative way and according to a 2008 article from the Journal of the American Health Management Association, widespread adoption of PHR technology could save the US healthcare ecosystem somewhere between $13 and $21 billion a year.

In the end, if current trends continue, it looks like providers and payers will continue to fund the adoption of PHRs. In a way, this can save society money through economies of scale. There are a finite amount of payers and providers and some are already working together to create standards across the industry. In the PHR game, if both payer/provider and patient participate, all parties benefit.

Society benefits down the road as the population becomes healthier and better informed on how to stay healthy.

IMPORTANT CONSIDERATIONSThere has been a lot of credible research performed on the topic of PHRs. Future researchers and system implementors should take advantage of the existing wealth of knowledge including these suggestions:

• Good user interfaces not only make for a more enjoyable experience but also increase data quality (Kim 2004)

• Most popular features were usually found to be medication overview and lab results sections followed by the treatment appointments feature (Ros 2012)

• Patients are most likely to engage with the PHR technology if the practitioner who explains it to them ‘buys into’ the pitch (Lee 2006)

• Organizational change management cannot be underestimated (Bonander 2010); it may be as or more important than the technology itself (Day 2012)

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In my research, I came across several considerations the authors thought future researchers and implementors should consider.

A lot of research has been done on optimal PHR user interface design and more must be done. Designing for patients is not easy as the information is very personal and a lot of feelings must be considered. Additionally, data quality from patient-entered data can vary based on the information design: using standard ontologies such as SNOMED and ICD can help but free-text input fields were found to be the most inaccurate.

There are a myriad of features PHRs can implement. Several studies have been done to see which patients use and appreciate the most so that those can be focused on and perfected. The most popular sections of one’s PHR, one study found, were the medication overview, lab results, and appointment scheduling options.

One study found that there was a statistically significant correlation between buy-in of the nurse who offered the PHR to a patient and if the patient decided to follow through and sign up and/or use the PHR. It was also found to be incredibly important that top-level executives believe in the PHR initiative within their organization for it to be successful. Such a major organizational change can cause changes in workflow and labor needs so executive and management buy-in is key for a smooth success.

RECOMMENDATIONS• Having a PHR puts the

patient in a position to more effectively monitor and impact their own health. Doing so can help more than just the patient.

• PHR system developers and implementors must keep patient and practitioner needs and feelings in mind throughoutthe process

“Having a Personal Health Record keeps me in control of my family’s healthcare.”

Retrieved 4/6/2013 fromhttps://www.mymediconnect.net/

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PHR benefits for individuals, provider/payer organizations, and society at-large more than outweigh the costs associated with development and implementation of this promising innovation in health care.

A key takeaway I would like to share with the reader is that PHR technology is useless if patient and practitioner needs are not met. Key stakeholders must be involved and respected in every step of the software process.

Thank you very much for experiencing my slide deck. I truly believe PHRs are worth every patient and provider’s time and effort.

I look forward to answering any questions and hearing everyone’s thoughts about PHRs. If one was made available to you, would you use it? Would (or have you) already gone out and created one for yourself on your own accord?