Personal health records (PHRs) have the potential to improve health outcomes but face challenges regarding interoperability, security, and privacy. PHRs could allow individuals to manage their own healthcare by communicating with providers and accessing health information. However, PHRs currently lack standardization and the ability to exchange information between different systems. Addressing issues such as determining security protocols, exchanging data between health information exchanges, and clarifying legal policies will help realize the full benefits of PHRs. Widespread adoption also requires resolving questions over who pays for and controls PHR data. Further research is needed to understand how to best design PHRs and incentivize their use.
2. Ideally, what is a PHR system? Contains comprehensive individual clinical data. Capable of population via EHRs Includes the ability to communicate with providers, schedule appointments, renew prescriptions and health plan benefits Control on access to data
3. Why are PHRs an important area of study? PHRs are not standardized Due to different sources of information and different features, there’s a lack of interoperability This is exacerbated by the current state of technological innovation and lack of policy guidelines Without interoperability between information sources (HIEs) the potential of PHRs will remain unknown In order to be used properly, security standards must be determined This is doubly true if the PHR system is internet accessible
4. Why are PHRs an important area of study? The potential for improved health outcomes. Some of these include Consumers would be more involved with their own health care and form stronger physician-patient relationships Providers would have improved decision making, and have less avoidable medical errors Payers would save costs from avoiding duplicate tests Overall population health improvement
5. Highlights of Study Government National Committee on Vital and Health Statistics National health information infrastructure requires data to support the needs of patient care, population health, and personal health. Requires individuals managing their own wellness and healthcare decision making Includes a PHR that is created and controlled by the individual or family Includes information and tools such as health status reports, self-care trackers and directories of health care and public health service providers.
7. Highlights of Study Journal of the American Medical Informatics Association – Author: Shane Reti “that no one knew what everyone else was doing, that PHRs were being developed in silos and that the good and not so good experiences were not being shared in the environment” Commercial leading PHRs products such as Google Health and Microsoft Heath vault are not HIPAA covered "are able to be more creative and move quicker because they don't require the same sign offs and double checks of HIPAA" PHRs are not currently patient centered because of technical issues of information processing. “overwhelming non-relevant information that was being fed into it from claims data”
8. Key Findings According to the National Committee on Vital and Health Statistics: Identifying potential liabilities, rights and obligations of consumers, providers, patients and other stakeholders in PHR systems is critical Those who use PHR systems should have the right to make an informed choice based upon the uses of their personal health information Security is one of the most crucial issues, especially when involving the internet The full potential of PHRs will not be realized until EHRs are fully adopted and HIEs are developed allowing for exchange
9. Key Findings Privacy is a big issue and gauging the public’s attitude towards sharing their personal health information is important According to the study - Sharing Medical Data for Health Research: The Early Personal Health Record Experience it was found that: Of all the participants 91% were agreeable to sharing their information for the purposes of research Also of the total participating 90% agreed to participate when they could do so anonymously
10. Key Findings The demand for PHRs has been increasing more and more, but security and control of information continue to be issues According to the study “Early Experiences with Personal Health Records” the shortcomings that need to be addressed for the future of PHRs are: Interoperability Knowledge bases within the PHRs Patient control of their health information Clinical Trials Chronic Disease Communities Access to information
11. Key Findings The development of completely functional PHRs can lead the way to creating effective HIEs in the near future According to the study “Personal Health Records: Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption” issues that must be addressed are: Who pays for PHRs? There is a need for “lay” terminology due to different levels of medical knowledge The lack of successful PHR business models could limit widespread use
37. Conclusion Personal health records are necessary to increase the quality of health care Lead to effective HIE adoption Need to move from location-based patient data to patient-controlled data All patient data should be gathered and accessible through one system Many issues regarding PHR implementation Privacy Interoperability Market-based health care
38. References Personal Health Records and Personal Health Record Systems: A Report and Recommendations from the National Committee on Vital and Health Statistics http://www.ncvhs.hhs.gov/0602nhiirpt.pdf Improving personal health records for patient-centered care http://jamia.bmj.com/content/17/2/192.abstract Halamka, Mandl, Tang. Early Experiences with Personal Health Records. Journal of the American Medical Informatics Association Volume 15 Number 1 Jan / Feb 2008. Personal Health Records: Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption. Journal of the American Medical Informatics Association. Volume 13 Number 2Mar / Apr 2006. Daniel, J.; Posnack, S.; Personal Health Record Website Inventory, Analyses, and Findings. Consumer Education and Engagement Collaborative, Massachusetts (2009). Tang, P. C., Ash, J. S., Bates, D. W., Overhage, J. M., & Sands, D. Z. (2006). Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc, 13(2), 121-126. Grossman, Joy M., Zayas-Cabán, Teresa, Kemper, Nicole. Information Gap: Can Health Insurer Personal Health Records Meet Patients' And Physicians' Needs? Health Affairs; Mar/Apr2009, Vol. 28 Issue 2, p377-389, 13p.
Notes de l'éditeur
http://www.ncvhs.hhs.gov/0602nhiirpt.pdf
http://www.ncvhs.hhs.gov/0602nhiirpt.pdf
http://www.ncvhs.hhs.gov/0602nhiirpt.pdf
http://www.ncvhs.hhs.gov/0602nhiirpt.pdf
JAMIA 2010;17:192-195 doi:10.1136/jamia.2009.000927Research paperImproving personal health records for patient-centered carehttp://jamia.bmj.com/content/17/2/192.abstract
http://www.ncvhs.hhs.gov/0602nhiirpt.pdf
Journal of the American Medical Informatics Association Volume 15 Number 1 Jan / Feb 2008Halamka, Mandl, TangEarly Experiences with Personal Health Records
Journal of the American Medical Informatics AssociationVolume 13Number 2Mar / Apr 2006Personal Health Records: Definitions, Benefits, and Strategies forOvercoming Barriers to Adoption
Interoperability/HIEMore accurate health data on patients- self explanatory- patients could give up-to-date information on their condition and physicians could view itAd Hoc Info in emergency situations- self explanatoryAccess on mobile devices- letting patients update their info from anywhere they are / allow physician to access anywhereCondition tracking- For pt.- Could do daily tracking with dashboards, giving patients motivation and an idea of where they stand with their condition. (As far as motivation goes, I have a story involving my mom how tacking her progress in excel motivated her to improve her condition)For physicians- Perhaps sending an email or reminder to the doctor notifying him of patients that are not getting better; Gives Dr. to keep with certain critical patients if needed; Giving access prior to appointments will eliminate “what are you hear for” time so the doctor can focus on what is important, possibly improving quality of care. Offer education/support group- ***Something that I totally just made up thinking about this stuff, tell me what you guys think***Facebook like ads- Facebook currently can read your information to prompt you to ads that are designed to your interest. Taking this to PHR, the web interface could have side bar ads that displays news stories, articles, and websites relevant to what ever condition the patient currently has or as at risk for having. For example someone records their BP every day on their PHR and shows signs of pre-diabetes, the side bar could have an article for healthy eating, a link to what diabetes is, another ad to a site that identifies ways to change your life to avoid diabetes. Stuff like thatAnonymous support groups- if you have a condition and need support, the web interface could offer you the opportunity to chat with others that have that condition under a made up user name. Could help in improving conditionsReference: Daniel, J.; Posnack, S.; Personal Health Record Website Inventory, Analyses, and Findings. Consumer Education and Engagement Collaborative, Massachusetts (2009)
User- Find out who uses it, how often, why, and does it work in delivering better care? Find out if people see this as a chore or actually fit it into their daily workflow? What conditions is this the most effective for? Does everyone need one? What data should be in PHRs? Don’t want everything because could lead to information overload and cause more harm than good How likely are patients to “fudge” data so that they look healthier than they are to avoid tests/procedures? Will patients hide data they are ashamed to share? Knowing this will know what conditions should have PHRs as part of their treatment. By understanding who uses you could make it more marketable to that audience and start the adoption process that could lead to others adopting. By seeing if it disrupts patients daily workflows, one could identify if more research is needed to make this more convient and how to achieve that. Knowing what kind of data should go in will help prevent against info. overload. Also, another area to be explored, what dashboards would be helpful in making the information easy for patients of basic knowledge to understand. Knowing about patient reliablility make the doctor apprehensive about the data of the PHR and possibly give root for types of discussion that might take place. For example, if the doctor notices that all of a sudden a diabetic patients blood pressure is normal from abnormal without the use of a statin.Adoption What platforms work best? Can phones handle this or should a third party device be made? Are Labtops suitable or do ppl not update because of laziness What methods are best suited for spreading adoption of PHRs? Should this be taught in schools to children to make this criteria for their living along side of brushing your teeth? Are financial incentives enough?Knowing these questions could yield the answer of making this more marketable to consumers and possibly making PHR/EHR interoperability part of consumer criteria when selecting a physicianPrivacy/Storing PHRs Who has the rights to make this available and store this data? Who should store all data? What regulations should be in place so only the people that need to see the record see it? Protections from selling data Is password enough for verification of the end user or should other barriers be in place for accessing data Who should have access other than the patient? The doctor, his staff, insurance companies, pharmacies, businesses, research,companies… who? Who pays for this? One paper suggest that patients and insurance companies should Knowing these questions could help improve PHRs as a whole which could aid in implementing these into practiceInteroperability What are going to be the standards in place so that PHRs can communicate with all kinds of EHR systems, regardless of vendorKnowing these questions could help improve PHRs as a whole which could aid in implementing these into practiceReference: Daniel, J.; Posnack, S.; Personal Health Record Website Inventory, Analyses, and Findings. Consumer Education and Engagement Collaborative, Massachusetts (2009)Tang, P. C., Ash, J. S., Bates, D. W., Overhage, J. M., & Sands, D. Z. (2006). Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc, 13(2), 121-126.
- Validity of claims data in making treatment decisions and whether accessing these PHRs is worth the disruptions to their workflowNeed to develop clear and understandable policy to address privacy issuesInsurers PHR – does not have the necessary information for claimsValue and usefulness of PHRInformation Gap: Can Health Insurer Personal Health Records Meet Patients' And Physicians' Needs?Grossman, Joy M.1 Zayas-Cabán, Teresa2Kemper, Nicole3Health Affairs; Mar/Apr2009, Vol. 28 Issue 2, p377-389, 13p
