Health Records: It’s Personal

Do you go and see many doctors for different problems? Do you have a chronic condition needing follow-up visits and repeat testing? If so, you probably need a personal health record (PHR).

#184952511 / gettyimages.com

According to myphr.com,

The PHR is a tool that you can use to collect, track and share past and current information about your health or the health of someone in your care.

Although personal health records can be paper-based, more recent usage of the term implies an electronic tool. Another definition at healthIT gov states –

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. PHRs:

  • Are managed by patients
  • Can include information from a variety of sources, including health care providers and patients themselves
  • Can help patients securely and confidentially store and monitor health information, such as diet plans or data from home monitoring systems, as well as patient contact information, diagnosis lists, medication lists, allergy lists, immunization histories, and much more
  • Are separate from, and do not replace, the legal record of any health care provider
  • Are distinct from portals that simply allow patients to view provider information or communicate with providers

I live in an archipelago of 7,107 disaster-prone islands called the Philippines. When patients come to see me in the capital of Manila, it is often difficult to retrieve medical records from the geographically isolated areas from whence they came. It is also next to impossible to retrieve medical records that have been lost through fire, flood or earthquake. I have been privileged to meet patients with personal health records, often paper-based – think plastic bags or envelopes containing loose sheets of illegible prescriptions, clinical summaries faded from flood water stains or half burnt around the edges to folders containing dog-eared carbon copies of lab results. These are the patients who come to my clinic, ready to tell their story and take active part in their treatment. They watch hungrily as I peruse their personal health records. I barely hear them sigh when I close the folder (or gather up the loose pages into the envelope or plastic bag) and gaze up at them. Their eyes meet mine in an unspoken question, “Well, what do you think Doctor?”

And so I agree with Tang et al –

“Personal health record systems are more than just static repositories for patient data; they combine data, knowledge, and software tools, which help patients to become active participants in their own care.”

Tang PC et al. Personal Health Records: Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption. JAMIA 2006 Mar-Apr; 13(2): 121–126.

Let’s talk about personal health records at #HealthXPh tweet chat this October 4, 9 pm Manila time (9 am EST).

T1 What are the barriers for individuals to keep personal health records?

T2 Which do you prefer and why – online, electronic or paper based personal health records?

T3 Which is better – provider-maintained or patient-owned personal health records?

#HealthXPH: Will doctors let patients read what they write?

#186481441 / gettyimages.com

 

I was scanning my Twitter feed a few weeks back when a tweet by Joseph Babian (@JoeBabian) caught my eye. It was a link to Dr. Leana Wen’s (@DrLeanaWen) post, “When Patients Read What Their Doctors Write.” In our Twitter conversation, I told Joe that I have one clinic that still had paper charts. I see many patients and I disliked having piles of these paper charts on my desk as I saw them in my office. My secretary would hand the patients’ charts to the patients as they sat in my waiting room. The patients would hand the chart to me as they came in the consultation room. I gave them back the chart to hand back to the secretary at the end of the consult. They can wait a long time in the queue and could read their medical charts at any point while they had it. I can say then that I let patients read what I write, for this one clinic. The other clinic I am in has an EMR – my patients there do not get access to my notes. And so I read with interest about the OpenNotes experiment. As it says on their website –

OpenNotes is a national initiative working to give patients access to the visit notes written by their doctors, nurses, or other clinicians.

I excitedly asked Joe if #hcldr tweet chat will be discussing this as I wanted to do so on #HealthXPH. As I related to him how patients can read their paper charts in my clinic, he wanted to know if patients had ever told me anything about what was written in their charts. Below are some things patients have shared with me –

  • Wow, I didn’t realize I’ve been seeing you since 2007 Doc! You and I have gone a long way.
  • Doc, in my list of medications from the last visit aspirin was included. However in the prescription you gave me then aspirin was not on it. Should I still be taking aspirin?
  • Here’s my HbA1c result Doc. I noticed on my chart that it’s better than the last time but looking further back on my record, I did better last year.
  • I was looking at my chart Doc if you had noted my ultrasound results from I think two to three years ago. I feel something painful here and maybe we should repeat that ultrasound. Your notes in my chart said it was normal. Should we repeat that ultrasound this year?

I can say then that I have not had any unpleasant experiences from patients being able to read what I write. I also see overseas contract workers who are seeking pre-employment clearances. I summarize my clinic notes and my recommendations – yes on paper still :) – and give it to these patients to give back to their pre-employment clinics. Some years back, one of the referring doctors asked me to seal my clearance notes in an envelope so that patients cannot read them. Apparently, it sometimes happens that despite giving my clearance for employment these patients are not allowed to work abroad for some other reason. These patients have argued with them about my evaluation since they were able to read it. I replied that I will continue giving them their evaluations unsealed. The unemployment rate in the Philippines is so high that many seek better jobs abroad. It is often heartbreaking when their medical conditions prevent them from being employed outside the country – they deserve to know what their medical evaluation says.

Let me quote from Dr. Wen’s post –

But there are new controversies arising. Should patients receiving mental health services obtain full access to therapy records, or should there be limits to open records? What happens if patients want to share their records on social media? Will such “crowdsourcing” harm the doctor-patient relationship? What if patients want to develop their own record and videotape their medical encounter? Are doctors obligated to comply?

Although my patients can read their charts, I’ve turned down requests to have their charts photocopied. Instead I provide them their case summaries. I can only think how easy it will be to share patients notes in digital format online on social media. I’ve not had any requests to videotape their medical encounter. A handful of patients have asked to have their photos taken with me. A few were happy overseas contract workers leaving for two to three years who wanted a souvenir to remember me by. Some few others were patients who wanted to document our encounter for their relatives who were not with them but most often were paying for their care – as proof that they consulted with me! I found that strange but I agreed to have a photo taken.

I’m very excited to have this conversation! Join us on Sept 6 Saturday 9 pm Manila time as we try to answer some of Dr. Wen’s questions at the #HealthXPH tweet chat.

T1 As a healthcare provider, will you let patients read your notes in their medical records?

T2 What do you think about patients sharing their records on social media?

T3 Do you think doctors are obligated to comply if patients want to videotape their medical encounter?

 

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