Is internet usage widespread enough to allow relying on patient-controlled records?

Today I was working with a patient charity to allow their patients to receive data from the national centre for treating these patients.

“Can we rely on the internet for patients controlling their records?“ asked the doctor. This a common question we hear, and I was about to answer but a member of the charity was ahead of me, and she answered straight away.

Yes. Initially, the charity was also concerned about the same issue, especially as many of its members are severely physically disabled, and the illness can limit the ability of a patient to have a job and an income.

So they surveyed their members. All but one of them said that, yes, they had internet access, and yes, they wanted to get their test results through the internet. The one person who said no said that she did not have internet access at home. But a week before our visit to the hospital, the charity’s patient liaison officer had contacted the woman to ask her about a separate matter, and the husband answered the phone. He said that he and his wife had discussed the matter, and that he would sign up to the web site on her behalf, because they definitely wanted to have the results through the internet. So the charity was confident that all its members would find Patients Know Best  useful.

We find this at all our customer sites. Universality is usual. This pleasantly surprises many professionals. We love pleasing customers, but if more of them knew this sooner, more patients would have control over their records sooner. There are three things we teach professionals about internet usage among patients.

1. The trend is your friend: In the UK, Ofcom’s data shows that 74% of people have broadband access at home, over a quarter have smartphones, and over half of teenagers have smartphones. The latter are important because they are rapidly becoming the default phones that people buy, over 90% of people have phones, and most people who have smartphones but no home computer will say that they have neither computer nor internet access.

But modern smartphones are more powerful and connected than the desktop computers I have seen in clinics, which is why we optimise Patients Know Best to work on mobile phone screens. We are focusing even more on this as we expand to emerging market countries such as those in Africa, where mobile phones are ubiquitous and brand new unlocked smartphones have dropped below $100 in price.

2. Technology is a bridge, not a divide: There is a lot of handwringing about the “digital divide”, and it is often brought up as the reason to avoid switching to digital services, i.e. to avoid leaving behind disabled people without computers.

This is well-meaning but misguided. If you are disabled, computers are the equaliser. They allow the physically disabled to earn an income, make friends from all over the world, and see their grandchildren. I have written about this from a personal point of view in the past, describing how computers helped me overcome my own disabilities, and the work of the Thalidomide Trust is an inspirational case study. In working with them I saw people without limbs who had mastered the use of computers to earn incomes and lead independent lives.

3. Carers are crucial: Many people who benefit from Patients Know Best do not use it. Rather they ask someone else to do so on their behalf. At children’s hospitals it is of course the parents who are supposed to be the legal users of the system, although I often find it is the children logging into the web site on behalf of their parents. But at other institutions, many of the patients delegate the use of PKB to their spouses or children.

Using a patient’s care support network, there is at least one person who cares deeply about the patient’s health, has internet connectivity, and is desperate to engage with the medical professionals on behalf of the patient as they cannot attend every appointment with the patient. These carers will gladly fill out a patient’s diary, carry out a doctor’s care plan for the patient, and consult with the medical team on behalf of the patient.

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