Electronic Patient Records
In The Netherlands the National Electronic Patient Record has led to a lot of concern and refusal of participation. 31% of the Dutch physicians have objected against subscribing to the National Patient Record (Dutch), 25% are still considering this step. Most of the Dutch Physicians don’t want their medical data in a National Patient Record. For English information about the Electronic patient records in the Netherlands
The Dutch National Electronic Patient Record (Dutch) is only a collection of summary care records, they only consist of the summary made by the general practitioner and a record of medication used and allergies. The summary of the GP only contains data from the past half year or the four latest consults, a summary of health problems, a summary of the medication used and known allergies.
The reasons for concern are mainly (Dutch): how to keep the data up to date, will patients still share sensitive information with their GP, privacy concerns and stigmatization and last but not least why should we use it, what is the evidence of the advantages of such an enormous expensive enterprise?
The proposed Dutch system is completely different from the use of a Personal Controlled Health Record Form. A personal controlled health record (PCHR) is a user controlled record. The user controls access and contents. User control over these functions is governed by subscription and access control mechanisms and annotation capabilities within the record system. It is generally assumed that increasing individuals’ abilities to view and share their medical histories or clinical decision support messages, will result in better self-care preparation and motivation, reductions in treatment and medication errors, and improved health.
There is also the Personal Health Record (PHR): a digital Web-based collection of a patient’s medical history in which copies of medical records, reports about diagnosed medical conditions, medications, vital signs, immunizations, laboratory results, and personal characteristics like age and weight are stored. Examples are Google Health and Microsoft’s HealthVault.
The acceptability of a Personally Controlled Health Record in a community based setting was studied and the results published in Journal of Medical Internet Research. The study was sited in an urban area within the northeastern region of the United States.
A range of study participants was included in each of three formative research activities: administrative, clinical, and public health stakeholders (n ~ 20) from the study community participated in focus group and one-to-one interviews.
Results
- Participants demonstrated low levels of awareness about personal health record technologies including PCHRs
- Participants appeared to overestimate the extent to which personal health information is available and flowing electronically within provider systems
- Participants were also concerned about privacy. Several specific mechanisms by which privacy might be threatened were identified, including: intentional identify theft, disclosure and misuse of information by insurance companies, accidental mix-up of records and their contents, mismatch of medical records data with personal health records, and misuse and inappropriate viewing, including “snooping” and attempts by health professionals to track or follow-up on outcomes of former patients and co-workers
- Participants expressed high value and interest in the concept of autonomy and welcomed greater access and control of their health information. They also woorried about the disadvantages of this autonomy. They were concerned about the locus of responsibility for maintaining the accuracy and integrity of personal health record.
- Participants expressed their need for technical assistance and for education of users engaged with this new approach to information
Overall these findings are not very different from the concerns of the Dutch physicians. In summary besides privacy safety other factors for success of electronic health records are usability and usefulness. With the speed of IT development these concerns should be solvable. The most important factor is public information supply and education. What do you think?
Related posts on this blog:
Microsoft beat Google with HealthVault?
3 Health Portals
Weitzman, E., Kaci, L., & Mandl, K. (2009). Acceptability of a Personally Controlled Health Record in a Community-Based Setting: Implications for Policy and Design Journal of Medical Internet Research, 11 (2) DOI: 10.2196/jmir.1187
aqua
May 22, 2009 @ 2:46 am
Hi Dr. Shock,
I sure missed your blog while I was computerless. That said the whole idea of electronic medical records stresses me out. I am very concerned for my privacy, for what information my insurance company has access to and for what information about my psychiatric treatment (in terms of therapy) my gp has access to. To me I can only speak freely, openly and completely honestly with my psychiatrist if I know only he and I know all the details of our talks…ironic given I write about my therapy. It is different though because online I am anonomous. In electronic health records I have no protection or anonymity.
…aqua
Rob
May 24, 2009 @ 1:41 am
This is really interesting, and might give us a glimpse of what’s coming in the States. I’ve been using HealthVault for a while, and really like the level of control it permits. It’s got a lot of cool tools, but what I like most is that I’m involving myself more in my health. Bring it on!
alex
May 27, 2009 @ 4:53 pm
The records are already there – the Dutch “Electronic Patient Record” is just an infrastructure to make those records accessible to health care providers treating the patient the records are about.
People don’t seem to mind information being transferred from, say, radiology to surgery (even between hospitals), so what’s the problem here?
Personally, I prefer my medication history being accessible to whoever’s treating me, with the risk of some third party gaining access, to dying from lethal medicine interactions.
This is, admittedly, an exaggeration, but the point is that the information in such records can help physicians do their work (better), which basically means it helps them help patients (better). Shouldn’t that outweigh the risks?
Dr Shock
May 27, 2009 @ 6:25 pm
Yep, I didn’t object either. It’s a development with probably little problems in the beginning but in the end the benefits exceed the disadvantages.
Dr Shock
lori
May 27, 2009 @ 10:30 pm
Privacy is always a concern, especially with the cost of healthcare today. I wouldn’t want my insurance company combing through my records on a routine basis. However, I just had to self-insure, and I had to provide ten years’ worth of records for every member of my family just in the “can I get coverage” process. Having gone through that, I opened a MS HealthVault account and I use it to enter every illness, innoculation and visit. That way, if I want access to it, or I want to share that information, I can. No way do I want to spend the hours I did to get coverage. And I’ve added my mother, too. Because as she gets older, I know she’s not remembering or sharing with her doctor everything that is going on. I have serious concerns about privacy/insurance companies, but I agree with Alex, the good outweighs the potential for bad.
alex
May 28, 2009 @ 9:44 am
Privacy is definitely a concern, but it is important to clearly define what the specific privacy concerns are here. In many debates, people seem to privacy it as an all or nothing affair – share / allow access to everything or nothing in all situations. The reality of it is more nuanced, though: sometimes sharing information is appropriate, sometimes it isn’t. Privacy would be a concern in the case of insurance companies and such, but it probably wouldn’t in the case of treating physicians having access to information.
In the case of the Electronic Patient Record in the Netherlands, insurance companies, employers, and company physicians will not have any access whatsoever, so inappropriate information sharing should not be an issue.
Of course there are risks, but I would imagine these already exist to some extent. If I repeatedly declare visits to a physical therapist interwoven with increasingly frequent visits to an orthopedic clinic, someone at the insurance company could reasonably conclude that my knee is deteriorating and raise the premium for orthopedic surgery or something similar. Again, this is somewhat far-fetched, but this type of situation is not unthinkable. To me, the possibility that the same risks already exist suggests a need for a more detailed, nuanced account of the implications of introducing such systems, in order to properly inform future users (patients) of such systems. I think fewer people would object, were they adequately informed.