The information age.

There’s no doubt about it – we live in an age of mass information and data. This has changed the way that we (consumers of that information) behave in certain situations. In the context of health, if you don’t feel well or have a strange pain, you’ll likely Google it before going to the doctor. Equally, if you’re diagnosed by your doctor with a particular condition, the likelihood is that you’ll do most of your research about that condition online.

This has led to an increasingly well informed patient population, which surely can’t be a bad thing. Wouldn’t you like to know what was potentially wrong with your car before you took it to the garage? It makes for a better conversation to fix or manage the issue.

The e-patient.

This informed patient movement has actually gone as far as some patients becoming what is know as “e-patients”. The ‘e’, according to Tom Ferguson who first coined the phrase, standing for “empowered, engaged, equipped and enabled”.

In the case of Dave Debronkart (known on Twitter at @epatientdave), all are true. Dave uses his website, Facebook page and Twitter profile to engage regularly on all things patient advocacy and engagement. He himself has been through an incredible and challenging patient journey having battled with late stage kidney cancer. Who better to equip and inspire others going through similar experiences?

A more level conversation.

All of this access to more and easier to understand health information has led to patients going into their medical practice with a stronger ‘base knowledge’. Thus, enabling them to have more a ‘level’ conversation with their healthcare practitioner. Again, this can’t be a bad thing and must help to progress the conversation more quickly from ‘what’s the matter with you?’ to ‘what matters to you?’.

Caution over misinformation.

All this is great, but we must take some caution. With more ways to easily share information, the risk of that information being misleading or inaccurate is higher. If you also consider the patient perspective – desperately searching for information about a disease you’ve just been diagnosed with – you’re less likely to be able to determine what’s reliable and what’t not.

For me this is where the role of patient advocacy groups and charities is essential. They can create and collate reliable and trustworthy information for patients, their carers and families. Also, as ePatients become better known and more established, I believe they will play a pivotal role in this too and given it’s coming from an individual rather than an organisation, that also helps from a credibility standpoint.

How should healthcare companies engage?

Whether it’s health providers, government or pharma companies, I think it’s essential that they simplify their patient communications and do it on a need-to-know basis. People are bombarded with informaiton and as we can see from the above, a lot of health information is being provided on a peer-to-peer basis. There are also benefits to both parties with this approach – healthcare and patients.

The benefit to patients is having access to information from a highly regulated source that at the end of the day, understands their conditions and available treatments better than most. In many cases, healthcare organisations also have the resources to create compelling materials – something that’s not always available to advocacy groups and ePatients.

The benefit to healthcare companies is simple – the better they can understand the informational needs of patients and feedback from them when dealing with diseases, the better they can provide healthcare in a meaningful way. It’s a win win.

The key to success is simple, but is where so many healthcare companies have missed the mark to date. Firstly, it’s about creating content and services that will be of genuine use to patients and aren’t already available elsewhere. And secondly, placing that content in the right place. Believe it or not, patients do not go looking for health information on healthcare corporate websites! Either dedicated channels need to be set up, or third party channels (think patient advocacy groups) need to be identified and where appropriate, partnered with to place that content.