Are “Personal Health Records” value for money?

What exactly is a Personal Health Record?

There is a big trend towards providing access to health and care records for Citizens and patients within the NHS, both locally and nationally. Majority of the STP’s have within their Local Digital Roadmaps mentioned that they would like to provide some sort of patient access to their records. Their best of intentions for such a move is to let the patients and citizens benefit from it.

There is a very subtle difference between Personal Health Record and Patient Portals. A lot of organizations here and across the pond use the term interchangeably, especially if the Personal Health Record is provided by an organization based on the data they hold for the patient.

The definition’s for Person Health Record as stated by
Royal College of Physicians is “...a digital tool that helps people to maintain their health and manage their care. It may do this by enabling them to capture their own health and care data, to communicate with health and care services, and/or to have access to their care record.’  and by

HealthIT.gov is “A personal health record (PHR) is an electronic application used by patients to maintain and manage their health information in a private, secure, and confidential environment.”

What are the Challenges with these Patient Portals, err…?I mean Personal Health Records?

I would concentrate on the challenges as the vendors do a very good job of selling them with the advantages anyway by touting them as a way to spur better patient engagement and set the stage for improved outcomes.

Privileged Users: Personal Health Record’s often aren't used at all by the very people who may need them most. The characteristics of the neediest are from ethnic and minority communities or those with lower median household incomes or from the older generation who may be not that Tech Savvy or can’t afford the digital tools to access the records.

Lack of Studies: There are some and if not many studies done to understand if patient portals (using it interchangeably for personal health records) if they actual provide any visible benefit. The few studies I have seen notably https://www.ncbi.nlm.nih.gov/pubmed/25733435 and http://bmjopen.bmj.com/content/4/9/e006021 suggest that there is no definitive evidence of improvements in health outcomes. I have not come across a clear benefits qualitative study of PHR (that's one for the swear jar), maybe because PHR simply does not provide qualitative benefits.

Misuse: There is a real risk that patients might misuse a patient portal for emergency situations and use the portal to request emergency care and the requests may not be taken seriously. There is also a danger that patients may contact clinicians through the portal and inappropriately send repeated messages, overwhelming clinic staff. Further, there is a worry that certain types of patients may expect immediate responses to their repeated electronic requests/communications.

Security and Information Governance: Security and Information Governance concerns around the access to patient’s portals are the biggest inhibitors to adoption of patient portals. Even if the vendors have provided the best security features around the portal platform, citizens and patient would be accessing it using unsecure devices at home leaving a way for unwanted sources find a way to get into the portal. Another aspect of Personal Health Records is it would allow citizens and patient to enter their own data through the portal and there is a risk they may put inaccurate data into the record, and the health organisations will be liable for mistakes carried out based on incorrect data. Also the whole process of confirming the identity of patient before allowing them to access the patient portal is a huge overhead for clinical organisations. 

Incentive: Patient Portals do not properly incentivize the patient either intellectually (providing enough data to prove useful) or financially. (Both in time and/or value)  Patients who are generally healthy have real lives and aren’t interested in fixating on accessing their data daily or letting their friends know of their “health status” through a post or photo.

Financial Viability:  Organisations who provide portals will find it is financially not viable to create a platform if not many patients and citizens use it. For example, Mayo Clinic found out that only 5% of all the patients who registered with their patient portal actually use it.

False Power: There was evidence that patients who access to health records regularly feel that they are in control of their health and would ignore warnings about their real health.

Interpretation: Patient Portals present the information from their tethered EHR's which contain clinical jargon. The patients would not fully understand the information present in the portal, triggering more phone calls and questions. Lab results could be particularly troublesome because clinically insignificant abnormal results are common and it may cause unwarranted worries to patients.

Interoperability: Patient’s expect portals to provide a way of exporting their data to their personal site/repository that they can then control (e.g., Google Health, HealthVault or other PHR) leading to extra communication channels into patient portals causing more worries. There are no standards defined to provide automated export or defined data set for such a capability.

Multiple Portals: Right now there is a multitude of personal health records within NHS, provided by primary care providers , acute/tertiary provider portals, IDCR portals, STP led portals and even national portals. This is causing huge confusion to patients about the number of avenues of clinical data access for them.

No Universal Definition: There are no clear and consistent policies in place today within NHS as to what a healthcare organization is obligated to provide a patient access to through these portals.

So what is the Minimum Viable Product for Patient Portals?

• Concentrate on providing transactional services such as online appointment scheduling, filling in repeat Prescriptions and communicating with clinicians for pre-booked remote consultations rather than using it provide access to their detailed data.
• Greater attention is needed to understand why vulnerable populations do not access it and provide incentives for them to access it. Concrete policies need to be in place to overcome racial, ethnic, and literacy barriers to portal use
• Present clinical data in a simple fashion and avoid clinical jargon, provide patient portals through primary care providers and encourage them to use Patient Online and have access to summary care record which should be enough for patients and citizens.
• Have a single point of access to all the patient portals with Federated access so that citizens and patient don’t need to  remember lots of passwords