Shared decision-making is more than asking what patients want

Medical students are sometimes surprised that we don’t always follow the guidelines they have learned in medical school and instead use the patient as our guide when making decisions. Shared decision-making involves exploring patient preferences and what is important to them.

This sounds obvious but it’s actually not easy. As I said before in this blog post, I’m not sure I can always answer the 5 Choosing Wisely ‘questions to ask your doctor’, which form the basis of shared decision-making.

Apparently many doctors believe they already do this when they don’t. For example, a survey of US-based health practitioners observed high confidence in the face of limited understanding. There are many myths about shared decision-making (the 2-minute video below explains the most common ones).

Shared decision-making is more than asking what a patient wants. It also includes providing information about the pros and cons of available options, including the level of evidence around risks and benefits of tests and treatments. If I and many of my colleagues find this challenging, how do patients experience it?

Your GP and Dr Google: a good team

Many of us use Google to look up health information. Even doctors google. I often use the search engine to show my patients for example images of anatomy or skin problems. As more people become tech-savvy and websites get better, I expect that Dr Google will be even more popular in the near future.

A study published in the Australian Family Physician in 2014 found that 63 percent of patients accessed the internet in the previous month; 28 percent had sought health information online; and 17 percent had obtained information related to problems addressed during a GP visit.

The challenge is of course to find reliable information. To help differentiate the good from the bad, have a look at this post: 6 warning signs that online health information may be unreliable.

It is recommended to check with a health practitioner that the information is applicable to you. Your doctor may be able to recommend some good resources too.

6 warning signs that online health information may be unreliable

If you are using Dr Google to find information about a health problem – like most people do – you will come across unreliable information. Here are 6 warning signs that will help you stay clear from quackery sites.

Information may simply be outdated or incomplete. But sometimes it is deliberately incorrect or manipulated, for example to make you buy something. How to differentiate between the good and the bad? (I admit, this is not always easy).

#1: The site wants to sell something

If a website is trying to sell a product, the information provided may not be objective. Be careful if the site is:

  • Showing lots of advertisements or testimonials, difficult to distinguish from the website content
  • Offering a free trial, money back guarantee or special offer
  • Using phrases or words like: Recommended by doctors, used by professionals, scientifically proven, patented technology, or guaranteed results.

A site may not explain that its main purpose is to sell something. Stay clear if it sounds too good to be true, for example if the website is promising you a miracle or magic cure, amazing results, or a new, quick or easy way to fix your health problem.

#2: It is not clear who makes the claims

Always check if a trustworthy health professional or professional organisation is providing the online information, like the Royal Australian College of General Practitioners or Physicians, the Australian Medical Association, the Consumer Health Forum of Australia or the National Prescribing Service.

Are links to original sources or scientific research provided? Missing or insufficient information may be a clue that a website is not reliable. Websites carrying the HON Code or HealthInsite logos are usually reliable.

#3: The website is out-of-date

Always check how old the information is. Has the website recently been updated? If the information is more than 2-3 years old it’s best to look for a different source of information – or talk to a health professional.

#4: The site has a less reliable domain

Trustworthy health websites contain the domains .gov, .org or .edu, indicating that the information comes from the government, a not for profit organisation or a university.

This doesn’t mean that other websites are always unreliable, but it’s good to find out who is sponsoring or paying for a commercial website (.com or .com.au) before relying on the information. You particularly want to know if the information favors the sponsor.

Websites written by a single person are less reliable than websites run by professional organisations. Yes, that includes this blog (I just shot myself in the foot, didn’t I?)

#5: You have landed on Wikipedia

Wikipedia scores high in search engines so it’s easy to arrive at a Wikipedia page. As much as I like Wikipedia, one study showed that it may contain errors.

#6: The site is requesting your information

Reliable health information is freely available online (at no cost), so there is no need to give a website your details, like your email address. If you must submit personal information, check what will happen with your details first.

Look for the website’s Privacy Policy: this tells you how a website or organisation manages your personal information. You may want to know if your data will be sold or provided to other organisations. A Disclosure Notice informs you if a site receives funding or accepts forms of paid advertising, sponsorship, or paid topic insertions.

More information

A rule of thumb: Don’t rely on one source. Try to find other reliable websites or sources confirming a message or claim about a product or service. Ask an AHPRA-registered doctor or health professional if you’re not sure.

If you would like to know more about finding reliable health information online, have a look at this 16-minute tutorial by the US National Library of Medicine.

Sources:

The benefits of consumer online access to health records

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 are some of the often-mentioned arguments:

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
  • Practitioners may need to change the way they write their notes
  • 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?

Is the new eRx electronic prescription service beneficial to consumers?

About ten years ago I did a locum in an innovative GP practice in The Netherlands. When prescribing medications, the computer system allowed me to either print the script and hand it to my patient, or send it electronically to the pharmacy. Consumers who elected the second option, were able to collect their medications at the pharmacy twenty minutes later.

I’m not sure how secure the system was, but it was easy to use, saved a lot of paper, and prevented lost scripts and medication errors.

ePrescribing in Australia

Here in Australia doctors are printing or handwriting scripts. This month however I noticed a little QR code in the top right corner after printing a script. It took me a while to figure out what it was for: Patients can scan this code with a mobile device, submit the information electronically to the pharmacy of their choice and pick the script up on a preferred day and time.

eRx express
Source: erxexpress.com.au

The app, developed by the Fred IT Group, is called eRx Express. It can be downloaded for free on mobile devices. It seems that the benefit for health consumers is reduced waiting time at the pharmacy – which is great, especially if people have already been waiting to see their doctor.

I also have a few reservations…

First of all, consumers have to scan and send information via their smart phones, and they still need to bring in the paper script when collecting their medicines at the pharmacy. So it involves a few more steps and we’re not yet saving trees.

Second, as always, I would like to know what happens with the data during and after scanning, transmission over the internet and on the servers of the Fred IT Group and others. Is the information sold or disclosed to third parties?

It would be good if consumer details and their prescription history would not be collected or used for other purposes. But usually, when something is free, we become the product. In other words, there is often a price to pay with regards to our personal data.

The small print

So, after a little search I found this information in the patient terms and conditions and the privacy policy:

You agree that we may disclose your de-identified prescription data to selected third parties for the research and marketing purposes of those third parties.

We do not warrant (…) that any data transmissions between you and us will be secure and that any data you send us shall at all times remain secure.

We reserve the right to (…) charge for the App or service provided to you at any time and for any reason (whether stated or not).

Conclusion

As long as private or governmental organisations want control of our health data for other purposes than patient care, eHealth initiatives will not take off. Of course health consumers are free to use this service, but at the moment the benefits do not seem to outweigh the risks.