Should consumers have online access to their health records?

Should consumers have online access to their health records?

Image: pixabay.com

Consumer access to electronic health records may not be far off. In the not-so-distant future people will look up their file from home or a mobile device. They will also be able to add comments to their doctor’s notes.

The Australian PCEHR allows limited access, but the US OpenNotes record system has gone a step further by inviting consumers to read all the doctor’s consultation notes.

Pulse+IT magazine reported that 18 percent of Australian doctors believes consumers should be able access their notes; 65 percent would prefer limited access and 16 percent is opposed to any access at all.

What are the pros and cons? Here is my take:

Pros

  • Improved participation and responsibility
  • Increased consumer’s knowledge of their health care plan
  • Better self-management
  • Consumers can read their notes before and after a consultation as reminder
  • Consumers can help health practitioners to improve the quality of the data, eg by adding comments
  • Consumers can better assist practitioners in making fully informed decisions

Cons

  • Consumers may interpret the data incorrectly creating unnecessary concerns
  • Increased risk of security breaches and unauthorised access
  • Unwanted secondary use of the data by eg insurance companies or governmental organisations
  • (Parts of) the records may end up in undesired places like social media
  • Practitioners may need to change the way they write their notes
  • Increased medico-legal risks and potential for errors occurs if data can be altered, removed or hidden by consumers
  • Increased workload

An article in the New England Journal of Medicine reported that OpenNotes participants felt they had a better recall and understanding of their care plans. They also felt more in control. The majority of consumers taking medications reported better adherence. Interestingly, about half of the participants wanted to add comments to their doctor’s notes too.

Most of the fears of clinicians were, although understandable, ungrounded:

  • The majority of participants was not concerned or worried after reading what their doctors had written (many just googled medical terms and abbreviations)
  • Consumers did not contact their doctors more often
  • A minority of doctors thought OpenNotes took more time, others thought it was time-saving

According to the OpenNotes team transparent communication results in less lawsuits. I couldn’t find any information about the security risks of the system.

Overall, consumers were content: 99% percent preferred OpenNotes to continue after the first year. Doctors were positive too, see this video:

Push and pull factors

Consumers have the right to know what information is held about them, and they have the right to get access to their health records. Online access therefore seems to be a logical step to exercise these rights. Although the PCEHR allows consumers to see a summary, the consultation notes cannot be viewed. OpenNotes is about sharing all consultation (progress) notes between a consumer and his/her practitioner.

I believe there are 3 trends happening that will push this development:

  • The culture of sharing data online
  • The increasing consumer participation in health care
  • Evolving digital and mobile technologies

The 3 main reasons why it will not happen overnight:

  • An attitude change towards full access takes time
  • Security and privacy concerns
  • Lack of incentives for software developers and practitioners

Improving transparency in healthcare

Online access to electronic records (viewing and commenting) will boost transparency. It will change the interaction between consumers and practitioners and may even improve quality of care. I’d love to see more trials and experiments in this area. What do you think?

16 thoughts on “Should consumers have online access to their health records?

  1. Thanks Edwin – another interesting post.

    As you’ve argued, the positives seem to outweigh the negatives. Given that the software for this can bought of the shelf, it’s just a matter of attitudes and political will now.

    For the last 10ish years whenever I write a letter to a GP re a person I’ve seen re their mental health, a copy is sent to the consumer/patient. A few colleagues think it’s risky/brave, I think it’s respectful. So far, there have been no complaints from either GPs or consumers.

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    • That’s great Paul! I find myself printing more results and findings for people, which is always appreciated. Online access indeed seems like a logical next step.

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  2. Great overview, Edwin. Another interesting initiative Stateside is Kaiser Permanente’s PHR. KP provides a mobile app for patients to view their records. They can even get most lab results on the app, without visiting the doctor (though results that are sensitive require a consultation first). But as you note, it didn’t happen overnight. Took a decade and a lot of money (and much trial and error) to get it right.

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  3. Edwin

    Another great article.

    I would be concerned people would misinterpret the medical information. This may do more harm than good. Your probably would not get any insurance coverage.

    If anything prepare the medical record in front of the patient and/or ask them to confirm the notes at their next consult.

    Doctors all have different writing styles it would be difficult to achieve consistency. Agree access to your records under supervision is my view. There are so many issues about other family members private information that may be accidentally disclosed to partners or insurance companies. One law suit can wipe out a practice/doctor. Do you really want to take this risk. Is it really necessary? Better communications via summaries is the only thing that is worth considering.

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    • Thanks David, I initially shared your concerns. Most of the doctors participating in OpenNotes changed their notes-writing style to make them easier to understand for non-medics – which is a good thing. Interestingly they also reported that information was not misinterpreted; actually the opposite happened!
      (notes had to be signed off by both parties).

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  4. If you own a plane, car, boat or anything else, the maintenance records are yours. Why is it that records about your body and mind are not considered yours? I see this as simply a reflection of the controlling nature much of the medical profession, and a reflex demonstrating a fear of the prospect of losing control and status.

    We are centuries past the point where the only literate people in a village were the priest and doctor. Today, it is easy for people to obtain information and take an interested role as clients, for whom doctors perform various services. Most professions have learned the new reality, however medicine is a laggard. The more the profession stalls and resists, using condescending arguments such as “you might misunderstand” to keep their clients out of involvement in their own health, the more likely it is that the profession will suffer as a result or inevitable societal changes.

    Liked by 2 people

    • Good points, healthcare has some catching up to do. It will eventually happen, just takes time.
      Unfortunately, the fact that we are in a highly regulated industry with numerous medico-legal pitfalls, doesn’t help when it comes to innovation.

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    • Interesting comparison. I would go along with it if we could also apply the rules I have seen written on the wall in a few repair shops.
      Cost of servicing your car: $ 50
      Cost of servicing your car with you watching over my shoulder $ 60
      Cost of servicing your car with you advising me $ 70
      Cost of servicing your car with you helping $ 80

      So sure – my patients can make me spend more time while they read my notes, debate the merits of my decisions, have their results and notes e-mailed to them, etc.

      Just be prepared to pay for it – and it will be a lot more than what I currently charge

      Perhaps I should start charging like the Solicitor whom I saw the other day – he told me he could not understand how GPs survived financially as he would not work for anything less than $500 per hour.

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      • Love your comparison Thinus, made me laugh!
        The OpenNotes doctors found that patients respected their doctor’s time & contacted doctors less often as a result of reading the notes.
        Doctors also found OpenNotes didn’t take more time (most doctors even forgot they were participating), and it improved communication & consumer satisfaction.
        It sounds like a win-win solution. I expect it will be common practice in the near future, just like eg online appointment systems.
        The NHS is trying to implement an open access system at the moment – will be interesting to see how they go.

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        • I think it would be great to have an opt out tab on notes – I can envisage open access to certain pathology reports/radiology reports/letters. I guess truly open access to our notes is here already under freedom of information legislation – what we are really debating is open online immediate access to notes. Some interesting situations could arise!

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  5. Good post. thanks.

    I’m a great believer in the “nothing about me without me” mantra. Most patients aren’t fools. They just want to be in control and responsible for their own health and well being. Our system needs to allow patients to BE responsible instead of just saying they SHOULD be responsible.

    Remember when FOI came into the health system? I was working in public hospitals in Victoria and the entire clinical workforce thought that the sky would fall in. But it didn’t. What did happen, though, was that our clinicians improved their note taking dramatically. There were no more insulting acronyms such as FLKS* or MHGCB**. Our patient records became incredibly professional, which I’d like to think they still are.

    It disappoints me that still, in this day and age, letters are sent about me to numerous specialists and others, but I am not included in the circulation list. Sometimes, it’s fair to say, I’m so anxious about a consultation that it would be helpful to have the back up record to check what was said.

    Enough soap box for today, but thanks again for this post, Edwin.

    Regards, Anne.

    *FLKS: Funny Looking Kid Syndrome
    **MHGCB: Mother Holding a Good Child Back

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  6. Thanks. Really interesting article and perspective. I am a GP in the UK who has enabled patients to access their full GP electronic health record. 23% of our patients currently access their records. We talk about knowledge-sharing rather than just record sharing. Amazing things happen when we build a “Partnership Of Trust” between patient and clinician. To do this we need to share the records and also provide an understanding of what they mean too.

    You can see more by looking at our practice based web portal http://www.htmc.co.uk

    Here are testimonials from patients that you may find interesting too

    http://www.htmc.co.uk/pages/pv.asp?p=htmc0304

    @amirhannan

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