Gulf between patients and doctors over EMR access

An Accenture survey of consumer attitudes towards patient access to electronic medical records has shown that 78 per cent of patients believe they should have full access, but only 22 per cent do so.

The survey of consumers follows one taken late last year of doctors' attitudes, in which only 18 per cent of doctors believed patients should have full access to their medical records.

While the consumer survey was more about attitudes than trying to find out if patients were actually asking for more access more frequently, it did bring up an interesting finding, which was that 47 per cent of Australian consumers without online access to their medical records would be willing to change doctors to achieve it.

The Accenture survey found that this percentage rises to 55 per cent among consumers under 55 years of age without online access to their records.

Leigh Donoghue, managing director of Accenture’s health business in Australia, said an impetus behind conducting the consumer survey was the results of the survey of doctors, which indicated that Australian doctors have more conservative attitudes towards patient access to records than other surveyed countries.

“We were really interested in how patients' expectations compared with doctors' views,” Mr Donoghue said. “There is a significant gap. What also comes through is that younger consumers have higher expectations in terms of online access, along with higher income consumers.

“That makes sense – each of these groups is IT literate and extensive users of online services … but the real challenge is to engage the older people who are going to become chronically ill unless they start to change some of their behaviours.

“Access to medical records has to be a part of empowering people to take more responsibility and be active participants in their own healthcare. That's why we have to start to change some of the attitudes around patient access and involvement.”

Mr Donoghue said Australian consumers differed from those in countries like the US and Brazil, where the expectation of online access to medical information and health services was much higher. Australia more closely mirrored the UK, he said.

“When it comes to healthcare [in the US] you have more direct competition and the innovation that comes with that, such as the ability to get repeat prescription refills online or wellness services via mobile health apps.”

“We are not wildly different from the UK, England in particular, which has similar characteristics in terms of consumer experience and expectations. Certainly, the national eHealth program in the NHS England focused heavily on provider enablement in terms of shared electronic health records, with consumer access treated as a secondary concern.

“In the last couple of years the NHS has sought to correct this. By comparison, through the PCEHR the Australian eHealth approach put much greater emphasis on personal control and consumer engagement.”

The survey found that over three-quarters of consumers in Australia (78 per cent) reported that they have limited or no access to their electronic medical records, despite the launch of the PCEHR last year, which Accenture was intimately involved in designing as the national infrastructure partner.

While Mr Donoghue is precluded from talking too much about the system, he said he did not think the PCEHR was the only way that patients will be able to access their information in the future.

“A number of GP products support this capability in the UK today. Locally, we're seeing moves from some of the health insurers to create a personal health record for their members. It has to be a part of empowering consumers to play a more active role in their own healthcare.”

On the concerns raised by clinicians with the PCEHR system allowing patients to withhold certain information if they so choose, Mr Donoghue said this needs to be kept in perspective.

“The reality is, clinical decision-making is based on partial information today and this will remain the reality for many years to come,” he said. “A significant amount of patient information is not available to clinicians today. We don't have information from allied health in the PCEHR system, we don't have information from specialists or from the private hospitals or from aged care, so that the vast bulk of information is not there today.

“It is always about making judgements based on limited information and the need to ask patients for more. Partial information is a reality of the health system today and only a small minority of people will restrict access to clinical documents held in the PCEHR.

Yet there seems to be a particular focus on the information that patients withhold, and I think that is out of proportion compared to the wider information gaps that exist today.”

He has been watching the submissions to the PCEHR review with interest, and has noticed a few themes coming through, including several suggestions to move to an ‘opt-out’ system.

“There is some strong support for the core infrastructure that is in place and a desire to build on it to deliver better clinical outcomes, but I can also see some emerging consensus around the benefits of an ‘opt-out’ system and the opportunities that creates by shifting the focus from registration ... to more meaningful use and how electronic records can support better care and clinical outcomes.

“That would be a constructive step. It's obviously a decision for government and we'll support whatever the government does but I think you can see those two themes emerging.”

Personal control

Accenture's survey of 1000 consumers in Australia as part of a total of 9000 around the world was taken in June, when business consulting firm Infosys also released the results of a survey on consumer attitudes towards sharing data online with healthcare providers, retailers and banks.

The Infosys survey of 5000 consumers, 1000 of whom were Australian, found that 92 per cent believe that doctors should have ready access to patients’ electronic health information.

It also found that consumers were confident in the security of their medical records and were comfortable sharing personal information with their doctor or local hospital. However, only 60 per cent say they are actually willing to share healthcare information online.

Allen Koehn, public sector general manager for Infosys in Australia, said the relative reluctance to share healthcare information online was probably due to a conundrum facing healthcare providers and governments over personal health information.

“My personal healthcare information is very personal, and you could argue that it's even more personal than financial data, yet I own it,” Mr Koehn said.

“The government doesn't own it and the insurance companies don't own it, I actually own it, but I probably have the least amount of control over health information compared to all of my personal information.

“I think that is part of the conundrum: certainly when you go to the doctor's office you are more than happy to sit there and speak with the doctor about very private information, but it's another thing to get onto a government website or even a private insurer's website and put private information out there.”

The Infosys study did find that consumers were interested in using apps for their healthcare, with 70 per cent interested in apps that helped them track their health goals, 73 per cent for helping them stick to their doctor's treatment plan, 76 per cent to communicate with their doctor’s office, and 75 per cent to coordinate appointments with their doctor.

However, they were much less interested in using apps to share their healthcare data with their doctor.

“There are more apps coming out where you can actually start doing business with government or doing business with your private health insurer, but if you look at what's available on the market now, there are a lot of apps that are superficial.

“I don't think there's a significant amount of apps available yet. That could be a reason why: there just aren't the apps available that people have seen and become used to and trust. If I go to my doctor and he says I'd like you to start using this app so that I can monitor your progress and we can communicate, that's a different story. I think that's still probably a leap that has to be made and that's again where innovation comes in.”

With the PCEHR, Mr Koehn said the system was just one piece of the puzzle. “You have Medicare, you have private insurance, you have dental, vision, the hospital, etc… These have all historically been silos of information, and the PCEHR will bring some of the silos together, but not all.

“If you look at the research, when it comes to mobile apps where people would actually have control of what they are doing and their personal information, the interest level is high. I think the government needs to open this whole area up to innovation.

“For example, all of the information that I put into the PCEHR, why can't that be opened up to innovation? It's my data and if I give permission, why can't someone come up with some wild idea of an app that helps me manage my health better?”

Posted in Australian eHealth

Comments   

# Diane 2013-12-21 00:50
It isn't just access to medical records that patients should have, it's also control over them, as a matter of principle. Maybe not to change blood test results to something incorrect, but we should have the right to remove things which we don't want recorded in writing. Where is our right to have an oral consultation with a doctor without having records kept?

I suspect those written medical records are probably one of the main reasons why patients withhold information from doctors. It's the reason why I would if it came to it.
# Simon James 2013-12-21 13:07
Hi Diane,

Patients have access to the records doctors keep about them, but this doesn't imply patient ownership of these records, and it certainly doesn't grant patients control over what is and isn't recorded by a doctor in *their* record about the patient.

As patients usually bill anywhere from the majority to the entirety of their healthcare costs to the government, medical record keeping is really not an optional part of the consultation and doctors would expose themselves to liability, both at the hands of patients' lawyers and Medicare Australia if their records were deficient.
# Diane 2013-12-22 14:46
Patients should have those ownership and control rights over their medical records though, it is them that data is about after all. I just find it a bit arrogant of doctors to take that basic right of data control away from us.

And like I said, patients shouldn't be forced into a position where they feel they have no choice but to withhold information because of that lack of control over *their* records.

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