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.
- 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?
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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