With near-instant access to personal data on smartphones, social media accounts and browsing habits, the "data revolution" has seemed to hit nearly every aspect of a consumer's life. However, lags still exist when it comes to personal health records, according to a Nov. 4 BMJ viewpoint article.
For the opinion piece, two patient editors for the BMJ explored reasons why access to patients' personal health records has moved much slower compared to other areas of our lives. The delay is "perplexing, particularly given phenomenal leaps in frontline medical technology for delivering care and treatment, and growing public interest in — and frustrations with — accessing particular health records such as covid-19 vaccine passports," the co-authors wrote.
Here are four reasons progress on patients' access to personal records has been so slow, according to the patient co-authors.
1. Patients may have ethical concerns that they may be harmed by reading "jargon-heavy notes" written by their clinicians, thus compromising trust between the patient and physician.
2. Patients may have professional and cultural concerns, or worries that physician-patient relationships will suffer in instances where difficult news is delivered via computer without the presence of a trained professional to support or guide the patient through the matter. There are also fears around data governance, such as decisions on which information can be shared and who can have access.
3. Health inequalities may exacerbate preexisting digital divides. Patients should have the means to access their health records and the proper tools to understand and engage with them.
4. There are logistical, technical and legal challenges that come with installing records platforms and technologies across complex health systems. Managing regional and national bureaucracies competing for oversight as well as multiple technology providers can stifle progress in achieving widespread records access.