Systems Project, Round 2: Additional Research on PHRs and Next Steps

In an era of ever improving advancements in the world of healthcare, it’s interesting to think that the most important improvement in health could be giving people a better picture of their health. It is arguable that no tool could be more influential than a holistic and insightful view of personal health. This is why I am choosing to look into the advancement and roadblock surrounding electronic personal health records (ePHRs). It has been widely argued that personal health records lead to significant advancements in health of patients, even more benefit to those with chronic conditions. Additionally, EHRs directly improve accessibility to knowledge of one’s own healthcare and can serve as an additive in the quality of care that can be received. 

The original intended direction of my research was to simply reach out to patients and survey them to learn more about their attitude towards ePHRs. I am planning on surveying a wide range of people, and not necessarily within the vicinity of a healthcare facility at the time of surveying, as most can be considered patients of the healthcare system at one point or another. I would like to include questions on this survey to gather interest in using a personal health record. Questions would gather data on if patients currently use a PHR through a care provider, if they would prefer a consolidated PHR or multiple portals, and how frequently they would access their PHR. I have included a sample list of questions at the end of this post, which I would appreciate feedback on prior to implementing and executing the actual survey.

While I do still think this is valuable insight, especially from those I could survey within our local community, I have widened my research to include secondarily looking into studies that have been done with patient populations already. A number of specific patient communities are often the focus of these studies, such as those with mental illness or Type II diabetes.

            

          One study that caught my interest was performed to see how feasible PHRs are for patients that suffer from severe mental illness. I think that positive findings from this population can signify significant opportunity with ePHRs, as patients with severe mental illness can often be harder to keep on a routine giving the debilitating nature of their illness. In a sample group of 58 participants with severe mental illness, 32 used the personal health record that was provided to them. Of those that used it, all said that they found it useful, and many noted that they would continue to do so. One other important thing to note is that 26 of the patients who chose to use the PHR did so during drop-in sessions, when there was in person support. This goes to show that this population was much more likely to use their ePHR with assistance, education and instruction.

            

          Another intriguing study was performed with a group of over 1000 patients in Taiwan, and something similar was found. After surveying patients at over 10 medical facilities in Taiwan, it was derived that there was a strong intention to use a USB based PHR if provided with one. In the same case as the much smaller study performed on patients with mental illness, a large difference in adoption could hinge upon whether or not there are adequate educational and informational tools. Both of these two studies indicate that patient understanding of the benefits that can come from PHRs, and how they should be used, are a critical factor in whether they will be adopted.

From our Consumer Health Informatics textbook, there are a number of key points that should be included in a personal health record to make them useful to patients and widely adopted. These include portability, interoperability, patient control, secure access and data protection as well as auto-population. While the concept of a PHR is simple, they can be very complex, cloud based, physical copies, tethered to an EHR system, or even untethered. This means that even in this technical age there is a lot of uncertainty around how things will look moving forward.

When it comes to a centralized portal for access to your PHR, there are a number of implications that should be noted. The first is that providing patient access to a wide-ranging personal health record provides one more area from which data can be compromised and exploited. Some patients may build accounts with weak levels of password protection for example, exposing their information to theft and compromise from malicious actors. Another concern is that if there was to be one centralized system online where PHRs were accessible, from hospitalizations to eye appointments, who would manage and develop the platform? Would it be a private entity that somehow was able to form partnerships and attain access to this data, or would the project be federally administered? Maybe a technology like block chain could be employed to ensure confidentiality of patient information (see my most recent blog post about a new ePHR that is being built upon blockchain). Additionally, some patients could possibly push back against having their information all located in one place, or in the possession of another group aside from their direct medical providers. Even if these issues were to be overcome, it is safe to assume that it would be a large capital expenditure to develop and coordinate such a strong system. There are a number of complications that could mean there are significant delays, or that it is never fully developed.

In the coming decade, or maybe just the coming years, I’d love to see a more comprehensive and accessible PHR portal be developed. Personally, I would use this information to check my immunization history, view transcripts from doctors’ appointments, and review my prescription history. Regardless of care provider or time, having all of this information quickly accessible in one place would be extraordinary for the average patient, let alone those who deal with chronic or terminal health conditions. Between now and then, I am hoping that through firsthand surveying I can gauge what patients are seeking and hoping for in this next wave of technology based healthcare advancement. If you have suggestions or ideas on what you’d like to see from my research, please let me know. I am hoping that my questioning can provide a bit of unique insight into the desires and needs of those within our local community.

Possible Survey Questions:

Do you currently use one or more web portal for any doctor, hospital, or health provider that you visit?

Do you keep a personal record of your health via either your computer or a hard copy?

If a web based portal is available through your provider, would you sign up and access it at least every six months?

Would you pay any monetary value for access to such a system? If so, what is the maximum annual price you’d be willing to pay?

Would you prefer to access your PHR and web portal via desktop or mobile device more?

Do you expect the capability to directly contact physicians and care providers through a web based portal?

Would you enjoy if the portal sent your mobile device push notifications to alert you to upcoming appointments or soon to expire prescriptions?

Are you willing to pay higher health insurance premiums if the insurer centrally tracks and advocates to receive and store your personal health record?

References:
1. http://www.healthcareitnews.com/news/kaiser-phr-sees-4-million-sign-most-active-portal-date
2. http://www.medscape.com/viewarticle/883612

3. Consumer Health Informatics, Ch 10, by Robert Hoyt and Ann Yoshihashi

4. https://www-biomedcentral-com.ezproxy2.library.arizona.edu/track/pdf/10.1186/s12888-015-0558-y?site=bmcpsychiatry.biomedcentral.com

5. https://www-biomedcentral-com.ezproxy2.library.arizona.edu/track/pdf/10.1186/1472-6963-12-277?site=bmchealthservres.biomedcentral.com