Patients' blogs—do doctors have anything to fear?

Abstract

Blogs written by parents about their sick children's condition and treatment can be beneficial if handled sensitively. Matthew Hurley and Craig Smith point out the pitfalls to avoid

In recent months we have had very different experiences of parents using blogs. One family used a blog simply to update family and friends overseas about their extremely premature baby. It contained a daily record of events, including details of procedures and the names of staff looking after their baby. In another blog the parents of a baby with rare congenital abnormalities used it to keep detailed records of medical care and decisions, including discussions and disagreements with different medical and nursing staff. Both blogs initially caused some concern among staff.

The phenomenon of parents' blogs may have a unique association with paediatric and neonatal practice. It is common practice for parents to take photographs of their babies to log their progress. Electronic dissemination makes sharing these experiences easier, and for many the blog is simply the modern photograph album or memory box. Keeping a blog can be beneficial to parents: it lightens the burden of daily telephone contact and provides written support when others reply to the site. Many parents already publish their experiences on conventional websites in the hope of helping others. Such altruistic blogs include entries on charity affiliated websites, which can be used to publicise a particular illness by attracting the media to an individual's story. This medium may also lend itself to whistleblowing in the public interest.

Blogs can be a useful source of information for patients. Parents go to the internet for information during diagnosis and treatment of their child's illness. Blogs narrate an individual's experience that may not be representative. Parents intent on leading care decisions, in an attempt to achieve the best possible care for their child, could use their own or other blogs as a novel way of meeting this objective. This information must be viewed with caution, but it can also encourage discussion and learning. At our hospital the parent can take a “prescription” for information from the community paediatrician to the patient information library, where a specialist librarian is available to direct the family to reliable resources.

Reading a family's experience of an illness and the care given can provide clinicians with a valuable insight into parents' understanding and help identify elements of the care pathway that need improvement. The temptation to contribute to a patient's online blog needs careful consideration. Employees who write about their work on blogs have been “dooced”—that is, they have lost their jobs through expressing their views in a blog. Instead, more effort should be taken to improve opportunities of communication and the elements of care under discussion.

Blogging has legal implications. Healthcare professionals feel vulnerable about the publication of unedited material and opinion in real time. They may also be uneasy about parents who keep online diaries that may be used as evidence in complaints or legal proceedings. In our experience, many parents already keep a written journal and photographs logging their baby's journey. An identical electronic version would have no additional legal ramifications.

If difficulties arise during care and the details are published, potential exists for the parent-doctor relationship to be compromised. Blogging, as a form of publishing, is subject to the laws governing defamation, which aim to protect a person or an organisation's reputation from harm. If you think that you are the subject of an untruthful, unwarranted, or mistaken attack on your reputation, you may have been libelled. Healthcare professionals may feel that a blog misinterprets a sequence of events or, even worse, calls into question their competence or professionalism, publicising this to other parents and staff. Healthcare staff must then decide whether they wish to pursue defamation.

If pursued, the publisher (the internet service provider) may claim “innocent dissemination,” stating that they did not know that any published statement was defamatory. However, the Defamation Act 1996 makes provision for the publisher to make amends, which includes publishing an apology and paying costs. The internet publisher should have a “notice and take down policy,” whereby offending material may be withdrawn from public access.

There is also a risk that blogs may compromise the right of confidentiality of other patients on the ward or their parents. The legal and ethical protection of confidentiality is underpinned by the Data Protection Act and by the General Medical Council. Parents should be encouraged to write in a way that doesn't identify individuals. Simple guidance for parents and professionals needs to be developed.

We support the use of blogs by families. Indeed, we aim to provide internet access for families in the near future to facilitate this. However, we recognise the vulnerability of everyone involved and aim to give guidance to parents and staff about parents' and patients' blogs.