Final Blog - Personal Health Records
As you all know, I've spent the semester looking into Personal Health Records. My interest in Personal Health Records stems from the seeming lag between consumer and patient expectations of what a personal health record should be, and what actually exists in the marketplace. My original goal was to survey patients in the local Tucson area about what their expectations, intent, and hope is for using PHRs. I eventually realized that simply doing a firsthand patient survey probably wouldn't get me the information I was hoping for, and that there were likely more in depth studies that had already been performed on the topic.
Throughout the course of my research I learned that there are many types of PHRs and many stakeholders riding on the success and information that they can provide. A basic PHR provides an electronic record of a person's health information, where they have the ability to track, manage, and participate in their own healthcare. Two key types of personal health record are tethered systems, which are fed patient info from a backend system like an EHR or Insurer database, and a standalone system, enabling patients to enter their own info and build data connections with providers.
Research
In my research I discovered three key inhibitors to the success and adoption of personal health records, and looked into three studies performed on specific patient communities about how PHRs can improve patient health and access to healthcare.
After looking into patient sentiment and professional research on PHRs, I determined three key roadblocks to be the capital intensity of building and maintaining strong PHR systems, interoperability challenges, and privacy and security concerns with storing more patient information. On the topic of development costs for PHR platforms, I found a very interesting cost model outlining expenses associated with building systems for one million patients. The all-in expense associated with building a platform ranged from 2.8 million dollars for tethered systems, to 6.6 billion dollars for a third-party standalone PHR. The costs do not get better from there, with annual operating costs ranging from 3.9 million dollars for tethered, and 1.3 billion for third-party. This presents a very poor incentive to develop systems without a strong return on the investment.
Interoperability and Privacy/Security are two other lingering issues surrounding PHRs. While Blue Button has improved standardization and the ability to transfer medical records, it can still be very difficult in many circumstances to get information into a tethered system from an out of network location. Also, patients and organizations alike agree that information security is a very hot button issue, and that an increase in attack surface area and portability of sensitive health information can be riskier for patients.
As I noted earlier, I also looked into three patient communities and their usage or perception of personal health records. The first patient community was patients with severe mental illness in London. 58 patients suffering from psychosis were given the option to use a personal health portal for 12 months to track and monitor their own mental health. Over half regularly used the system, most of which received in person training and consultation, and all who ended up using the portal would recommend using it to a friend or fellow patient. The study was a huge breakthrough on a small scale of how a PHR can be used to help improve patient health for even those suffering from severe mental illness.
Second, I dug into a study from Canada regarding patient perceptions of PHRs from those with chronic kidney disease. A survey was performed to gauge the patient level of interest in using PHRs and to elicit their concerns. The majority of patients in the survey were between 55 and 85 years of age, so this study gave a fairly good indication of what intent to use statistics may be for older patients. Overall, nearly 70% of patients noted that they would use a PHR if provided with one, and the greatest benefit was having access to in-depth lab results at their fingertips. Adversely, 42% of patients were concerned about the privacy and security of their health information, which was the greatest collective concern.
The last study I looked into involved the ability of PHR notification increasing the likelihood that veterans using the VA Healthcare system would subject themselves to preventative screenings for HIV. 12 patients and 15 providers were surveyed, and nearly all patients noted that an electronic message through their PHR portal would make them more likely to voluntarily complete a screening. In an interesting divide however, physicians predicted these preventative messages would significantly increase workload and questions, while patients thought they would be better informed and less likely to ask questions.
All three of these studies performed show that there is either evidence or interest in using PHRs to improve population health across numerous patient communities.
Implications
The research I did this semester made it more clear to me the steps that should take place in order to improve the adoption of personal health records. First, more work can be done to improve the security and portability of health information across platforms. Technologies and initiatives like blockchain and Blue Button will likely be leading the way forward in these areas. Additionally, it is important to properly standardize health data and create incentive for development and use. There not only needs to be a sensible financial model, but top of the line user interface and experience if patients will remain on platforms long term. There are some steep challenges facing the future of PHRs, but expect demand for more personal health information to truly lead the way.
References
Throughout the course of my research I learned that there are many types of PHRs and many stakeholders riding on the success and information that they can provide. A basic PHR provides an electronic record of a person's health information, where they have the ability to track, manage, and participate in their own healthcare. Two key types of personal health record are tethered systems, which are fed patient info from a backend system like an EHR or Insurer database, and a standalone system, enabling patients to enter their own info and build data connections with providers.
Research
In my research I discovered three key inhibitors to the success and adoption of personal health records, and looked into three studies performed on specific patient communities about how PHRs can improve patient health and access to healthcare.
After looking into patient sentiment and professional research on PHRs, I determined three key roadblocks to be the capital intensity of building and maintaining strong PHR systems, interoperability challenges, and privacy and security concerns with storing more patient information. On the topic of development costs for PHR platforms, I found a very interesting cost model outlining expenses associated with building systems for one million patients. The all-in expense associated with building a platform ranged from 2.8 million dollars for tethered systems, to 6.6 billion dollars for a third-party standalone PHR. The costs do not get better from there, with annual operating costs ranging from 3.9 million dollars for tethered, and 1.3 billion for third-party. This presents a very poor incentive to develop systems without a strong return on the investment.
Interoperability and Privacy/Security are two other lingering issues surrounding PHRs. While Blue Button has improved standardization and the ability to transfer medical records, it can still be very difficult in many circumstances to get information into a tethered system from an out of network location. Also, patients and organizations alike agree that information security is a very hot button issue, and that an increase in attack surface area and portability of sensitive health information can be riskier for patients.
As I noted earlier, I also looked into three patient communities and their usage or perception of personal health records. The first patient community was patients with severe mental illness in London. 58 patients suffering from psychosis were given the option to use a personal health portal for 12 months to track and monitor their own mental health. Over half regularly used the system, most of which received in person training and consultation, and all who ended up using the portal would recommend using it to a friend or fellow patient. The study was a huge breakthrough on a small scale of how a PHR can be used to help improve patient health for even those suffering from severe mental illness.
Second, I dug into a study from Canada regarding patient perceptions of PHRs from those with chronic kidney disease. A survey was performed to gauge the patient level of interest in using PHRs and to elicit their concerns. The majority of patients in the survey were between 55 and 85 years of age, so this study gave a fairly good indication of what intent to use statistics may be for older patients. Overall, nearly 70% of patients noted that they would use a PHR if provided with one, and the greatest benefit was having access to in-depth lab results at their fingertips. Adversely, 42% of patients were concerned about the privacy and security of their health information, which was the greatest collective concern.
The last study I looked into involved the ability of PHR notification increasing the likelihood that veterans using the VA Healthcare system would subject themselves to preventative screenings for HIV. 12 patients and 15 providers were surveyed, and nearly all patients noted that an electronic message through their PHR portal would make them more likely to voluntarily complete a screening. In an interesting divide however, physicians predicted these preventative messages would significantly increase workload and questions, while patients thought they would be better informed and less likely to ask questions.
All three of these studies performed show that there is either evidence or interest in using PHRs to improve population health across numerous patient communities.
Implications
The research I did this semester made it more clear to me the steps that should take place in order to improve the adoption of personal health records. First, more work can be done to improve the security and portability of health information across platforms. Technologies and initiatives like blockchain and Blue Button will likely be leading the way forward in these areas. Additionally, it is important to properly standardize health data and create incentive for development and use. There not only needs to be a sensible financial model, but top of the line user interface and experience if patients will remain on platforms long term. There are some steep challenges facing the future of PHRs, but expect demand for more personal health information to truly lead the way.
References
Gearon,
Christopher. “Perspectives on the Future of Personal Health Records.” June
2007.
Harrison,
Tyrone, et al. “Patients with Chronic Kidney Disease and Their Intent to Use
Electronic Personal Health Records.” Canadian
Journal of Kidney Health and Disease, 2015. BioMed Central.
“The
IHI Triple Aim.” Institute for Healthcare
Improvement, www.ihi.org/Engage/Initiatives/TripleAim/Pages/default.aspx.
McInnes,
Keith, et al. “Use of Electronic Personal Health Record Systems to Encourage
HIV Screening: an Exploratory Study of Patient and Provider Perspectives.” BMC Research Notes, 2011. BioMed Central.
“Personal
Health Records and The HIPPA Privacy Rule.” Office
for Civil Rights, www.hhs.gov/sites/default/files/ocr/privacy/hipaa/understanding/special/healthit/phrs.pdf+.
“QuickStats:
Number of Deaths from 10 Leading Causes.” Centers
for Disease Control and Prevention, Centers for Disease Control and
Prevention, 1 Mar. 2013, www.cdc.gov/mmwr/preview/mmwrhtml/mm6208a8.htm.
Robotham,
Dan, et al. “Electronic Personal Health Records for People with Severe Mental
Illness; a Feasibility Study.” BMC
Psychiatry, 2015. BioMed Central.
Shah, Sapna et al. “A Cost Model for Personal Health Records
(PHRs).” AMIA Annual Symposium Proceedings 2008 (2008):
657–661. Print.
Studeny, Jana, and Alberto Coustasse. “Personal Health Records:
Is Rapid Adoption Hindering Interoperability?” Perspectives in Health
Information Management 11. Summer (2014): 1e. Print.
Wachter,
Robert M. “Personal Health Records and Patient Portals.” The Digital Doctor: Hope, Hype, and Harm at the Dawn of Medicine's
Computer Age, McGraw-Hill Education, 2017, pp. 185–193.
Hey Spender,
ReplyDeleteYour blog post was very interesting to me simply because it related to mine so heavily. We came to very similar conclusions on issues with EHRs and PHRs; there's a heavy disconnect with what patients have access to and what they want.
The most enlightening part of your research was the VA study you get into. Voluntary screenings can easily save lives, and anyone with access to them at the VA should absolutely take the chance to do them when they can. Sometimes people just need a gentle reminder or push to do so, and PHR systems on their phone can make this a simple process for anyone. I don't mind the part of increasing workload and questions, as that's what doctors are for. If they can have their administrative workload decreased through more efficient EHR data entry, they'll have more time to answer these potentially live saving questions.
I forgot the last part!
DeleteI would like to know more about prominent PHR systems that are in development, and how they currently communicate with EHR systems (if at all), and how that is going to change in the future, and who's planning on changing it (the EHR companies, or the PHR companies, or potentially someone else?)
Hey Ben,
DeleteThanks for reading my info and for your response. In terms of current prominent PHR systems, I'll characterize them into the Tethered systems and Non-Tethered systems available. Some of the biggest tethered PHRs are MyChart (Interfaces with Epic EHR), and FollowMyHealth (Attaches to the AllScripts EHR). In reality however just about every large EHR provider is offering some form of PHR or patient portal. On the standalone side companies like Google have built PHRs that have failed. Some notables include HealthVault (Microsoft), PatientAlly, and LifeOnKey.
I anticipate changes in the future surrounding blockchain's influence on securing and sharing PHR data, and more standardization on how to share data. I assume these changes will likely come from PHR providers, insurers, or some form of governing body.
In response to how they interface with EHRs it depends. If it is a tethered system it is simply built into the EHR system on the backend, with out of network info likely needing to flow into the EHR before transferring into an individuals PHR. To get into for a standalone system, individuals can utilize Blue Button or make a records request to the healthcare provider.
What, no mention of Blockchain in your final blog? It is something you explored briefly on your blog. Please link to the URLs to avoid copying and pasting.
DeleteAnother comment. I was not aware that the cost data you presented and wrote about is from 2008, which means the data might in fact be older than that. I was a bit surprised by the numbers when you presented it. Interoperability and security of PHR are probably less of a problem since most mobile devices are tethered to the PHR; those that aren't require patients to put in their own data, which is great for monitoring and tracking. It is questionable about whether EHRs can allow individual patients to upload their data to their mobile apps. Something about HIPAA violations, I think.
DeleteI mentioned this to you on D2L, but "intent to use" and "use" are not at all correlated. One is an expectation of use, the other is the complexities of actual use. Plus there is a measure known as the self-interest bias, where you want to present yourself in a positive light, sure I'll use it (I have a library card), but the actual use (and going to the library) - the behavior - is not associated with its intent.
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ReplyDelete9. Cerebrovascular disease 10. Lower respiratory infections 11. Syphilis 12. Influenza A-H1N1 (swine flu) 13.Ischemic heart disease 14. Chronic obstructive pulmonary disease 15. Whooping cough 16. Perinatal complications 17. diarrhea 18 .. lung cancer.
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