Tessa Richards: Lifting the lid on information and learning from it

Tessa RichardsProgress. The march towards giving patients online access to their medical records is accelerating. The Society of Participatory Medicine has put out the bunting in welcome to the announcement by the OpenNotes initiative that 1.8 million more US patients can see and share full versions of their doctor’s notes; and that big US providers, including the Veterans Administration and the Beth Israel Deaconess Medical Center, are on track to provide online access to notes from all specialties in 2014. Back in the UK progress seems slower, despite the government’s pledge to give all patients online access to their GP records by 2015.

Most patients are of course long inured to doctors holding all the information cards and dealing out selected bits in dribs and drabs. Asking a GP for a print out of your medical record can still feel like an act of aggression. One friend, worried and confused about his multiple disorders and nine different medications, said he did not dare ask his practice for a copy of his notes in case, “my GP holds it against me.”

A sad, if possibly unjustified observation, in a world where promoting patients health literacy is a universally accepted goal. And the provision of good quality information (and it does not come more pertinent than your own) is, as a recent report, Making the Case for Information, underlines, an effective medical intervention in its own right.

A failure to provide good written information and good oral communication has just been ranked as the third highest cause of written complaints to the NHS. A similar message about its importance emerges from the 2013 Macmillan survey on the experience of cancer patients. This got plenty of attention last week because nine of the 10 trusts ranked lowest for patient experience were prestigious London trusts.

In its new publication on how to improve the experience of cancer patients the point is made that not only do patients lack information but many are also insufficiently emboldened to ask for it.

A simple way to foster good communication, the report suggests, is for health professionals to introduce themselves to patients. The same message is being pushed in an online campaign #hellomynameis, started by Kate Granger. In responses it’s evident she has struck a chord and I’m not surprised.

One of the most intimidating things I found about being on intensive care was the ward rounds. A bevy of frequently changing health professionals would assemble at the foot of the bed, talk briefly, ask the odd question, make the decision of the moment, and move on.  My care was impeccable, my nurse beyond praise, but I longed for one of the bevy to identify themselves as “my doctor” and sit for a moment to talk.

Listening to and learning from patients’s experience is  work in progress. Health professionals still need a better understanding of what constitutes good communication and a good experience from the patient’s perspective.

A friend recalls the opening gambit of a consultant to whom she had been referred  for management of metastatic cancer. After a nervous wait in the oncology department she was called in.

“Why have you come to see me? ” he asked “ is it my expertise or had you heard about my good looks?”

It was said with a smile but in the context, she was floored.

Beyond the anecdotal, which will always throw up odd quirks, there are now plenty of initiatives systematically looking at and collating patient experience data. One good example being the In My Shoes project. The challenge is how to interpret, use it, and overcome scepticism about the value of doing so.

A trustee of HealthTalkOnline which provides qualitative distillations of patient and carer experience in a wide range conditions told the BMJ that neither clinical commissioning groups nor educationalists appeared to see this information as a resource worth investing in.

Like online access to records, and patient control of them, and the provision of “in time” appropriately targeted health information, this looks like being a slow march whose pace needs to be quickened.

Tessa Richards is senior editor/patient partnership.