I'm determined that my mother's death won't be in vain
Blogger and health campaigner Joanna Slater has developed an app in a bid to help tackle communication breakdowns between medics and patients.
Have you ever left a medical appointment and suddenly thought you didn't understand or can't remember exactly what the doctor said? Or are you one of the patients whose notes have gone missing?
Health campaigner Joanna Slater is developing an app to help address these very things, called MyNotes Medical, which will enable people to make audio or text recordings of consultations and list treatments and medications they've received.
Along with co-founder Brad Meyer, she has now set up a crowdfunding site in a bid to raise money to put the finishing touches to the app, and they hope to be able to launch it later this year.
For Slater, reaching this point was triggered by personal experience. Her 85-year-old mother, Kay, died in hospital in January 2008, six months after being admitted for hip surgery.
It was a deeply distressing time for Slater, who started a blog based on notes she made during Kay's hospital stay, detailing her mother's decline following what was meant to have been a routine operation and her frustration at not getting "straight answers" regarding her treatment (strength-in-numbers.co.uk). She believes her mother's death could have been prevented were it not for "inadequate care resulting from poor communication between medical staff", and is determined to help stop communication problems or lost notes affecting other people's treatment.
"So many medical mistakes are through lack of communication and not understanding what the doctor's said," she says. "There were lots of things that happened with my mum that could've been avoided if I'd understood more and had been more in control. My mum's not here now, and I wanted to put my energy into something that would help people, so her death wasn't in vain."
Slater, of Hertfordshire, received a huge response from the public after highlighting her experiences through her blog.
"I then realised how many people are suffering through lack of notes, lack of communication, and not understanding what's been said," she adds.
"I know myself that sometimes when I've been to the doctor, I come out and think, 'What did he say, what was that medication called?' and so on.
"A doctor will speak in medical language and the patient often doesn't understand it. A lot of patients are frightened to ask questions too, but by recording their notes they can review them."
How it works
MyNotes Medical will be designed to enable patients and carers to make text, video, audio and photo notes on digital devices while with a doctor, or soon after.
Notes can be saved in date order to a fully secure server and/or PC. Personal files are visible through logging in with an ID and password.
Personal information and treatment/medication details can also be added. Visit www.mynotesmedical.com
A 'really useful' tool
Katherine Murphy, chief executive of the Patients Association, notes: "Probably only a small percentage of elderly people will be comfortable with using an app, but they could get some help from friends and relatives, and it's still a lot better than nothing."
She says the app could help offset problems caused by the loss of medical notes, and adds: "Notes going missing is a big problem - they frequently go missing and are not with patients when they have appointments, so to have an app that records your information will be really useful."
Could it breed mistrust?
Dr Maureen Baker, chair of the Royal College of General Practitioners, agrees that health apps can be useful for both clinicians and patients, but says they need regulating to ensure patient safety.
Also, she notes that, for years, GPs have entered all patient records electronically, so in the general practice arena, loss of notes isn't a problem. Patients are also entitled to request copies of their records.
She suggests MyNotes Medical has the potential to foster "mutual mistrust" between doctors and patients, and could lead to further strain within the NHS.
"Making a diagnosis in general practice is a hugely complex task, and it is in nobody's interests to make it more difficult by adding the extra pressure of being recorded by our own patients," she says, adding that recording GP consultations could lead to GPs being overly cautious for fear of repercussions.
"In some cases, this would also lead to over-referral for illnesses, which in turn would cause unnecessary strain across the health service, and distress to our patients.
"What patients need is for general practice to be properly resourced, so that GPs can provide them with the safe care they need - not an app that simply serves to cast blame when things, unfortunately, go wrong," Dr Baker adds.