Mark Duman, from Monmouth Partners and PIF Online, gave an excellent seminar at our Centre earlier this week. He made lots of very good points, about what it means to be an active patient and why the NHS doesn’t – but should – encourage patients to adopt this more active role, but one point in particular I want to focus on is the ‘Amazon analogy’. He made the point that we are active consumers in terms of most services, particularly online, but when it comes to healthcare we sit back into a passive role.
I started thinking about how I typically buy a product online, and what expectations I have. I search for the item I want. If I’m on a specific site, I even get slightly annoyed if it doesn’t recognise what I’m typing part way through and take me straight to it. I’m shown a selection of pictures, the highest and lowest price available from different sellers, the time it would take to dispatch, and a 5 star rating based on other’s feedback. I quite often read the reviews when I purchase online – there’s always one or two that are ill-thought out and a bit useless (“I ordered it in blue but when it came it wasn’t like the blue that I wanted what a rip off” etc) but on the whole it’s a good way of checking what the product is like in reality and quite often other people will be answering the questions that matter to me (“the wire is quite long enough to stretch round the average computer screen” for example). I then choose which seller to buy from, based on the cost, delivery time and their feedback.
But it often doesn’t end there. I expect a confirmation email of the order and also the dispatch date. I like another email when it’s actually sent out and a clear message saying who to contact if there’s any problem. If I’ve purchased directly from a store, rather than from another individual on ebay for example, I can choose for them to deliver to my house, a different address or a click and collect spot. I now usually expect them to take my mobile number and call me when they’ve arrived with the delivery, not just leave a soul-destroying depot card. If I receive the item and it isn’t right in some way, I expect clear instructions on how to return it and a full refund. If months later I want to check something about the order, I type it into the search box under ‘My Account’ and can see everything I need. And if I actually only ever got to the stage of looking, I will often get emails from the store suggesting similar items.
Now you could just focus on one aspect of this – greater choice. The ability to ‘shop around’ and compare, and pick which store or buyer to purchase from. Certainly the ConDem government have focused on this in their “reforms”, with choice of provider somehow in their minds key to patient satisfaction. But there’s much more happening here, and I think focusing only on choice is taking the idea of patient as consumer too literally when there are other aspects of patient need that we could explore.
There’s linking in with other customers to share knowledge and experience. There’s personalisation, in terms of choice of how the product gets delivered and personalised recommendations based on my buying history. There’s a wider service offered beyond the sale, taking into account delivery and returns. There’s reassurance. There’s control, on my part, and I’m kept fully informed and able to check up on the order whenever I want. I actually tend to use the same stores regularly even if Google shopping shows the item is slightly cheaper elsewhere. This is about experience, and perhaps trust: I know the quality I can expect from those stores and that there will be no problems with any of the other issues, and I value this sometimes over and above saving a few quid by buying from another, cheaper, seller.
It’s in these comparisons that health care really falls down. Can we share our experience with others (sites like Health Talk and Patients Like Me show how powerful this can be)? Can we access our own information? Can we opt for the service that’s most practical for us or do we have to always do the equivalent of taking an afternoon off to go and wait in the depot queue until a grumpy postman insists they never had your item anyway. In terms of the wider context, it made me think about parking. One of the most common complaints about hospitals is that there’s never enough parking, and I’ve seen clinicians on twitter once or twice ask that patients please remember they’re getting top quality health care and so maybe don’t just complain at them about the parking when you’re getting your treatment. But this ignores the fact that, for the patient, getting a parking space is part of that health experience, and it can be stressful and upsetting when the patient is probably already quite stressed and upset. I’m not expecting every GP or surgeon to become intimately involved with parking arrangements. But they should at least recognise that these wider issues are part of that patient’s journey and affects how they feel. Also, maybe if the consultants kept bugging the managers about better parking for their patients, something would actually get done about it…
I think this post makes a similar point about digital services more broadly. It’s easy to just focus on one ‘dimension’ of user need, when actually we need to move out into different areas. In the case of health care, choice is just one dimension, and stretching out along it to give more and more choice isn’t really development and it’s very easy to neglect the other areas of user need that we need to extend into. The online shopping contrasts show how community, control, communication and care are all other dimensions of need that health services often fail to meet.
I can imagine there being a service like this for research. You could log on, search for projects you might be interested in, and choose how to take part. The research team then sorts out the ‘delivery’ to you and makes sure you’re fully informed about the project and how to get more information about it. I’ve seen calls for databases like this to be put into action, and arguably it’s what sites like Citizen Scientist are aiming for.
The one problem with this though is that it assumes people will think to log on and look up a research study. Maybe health research should be more like Kickstarter. Kickstarter for those who don’t know is a ‘crowd funding platform’ – rather than products being available and you buying them, you read a description of what the product would be, and if enough people promise to buy it then it gets made.
Imagine a research service where we tell people about a project we want to do, say a research trial. We advertise it and reach out to the different communities, digital and offline, that we think could be interested. We ask for their support. They can get involved at multiple different levels depending on their level of interest and how much they can throw in (in terms of time in this case rather than money). They get regular updates about the progress of the project and are quickly informed about when they will get the goodies they asked for. More subtly but very importantly, they feel a part of it. They made it happen.
If we took this analogy the whole way, we’d say that research projects wouldn’t actually get funded until enough patients back them. I imagine this very idea would scare the hell out of the vast majority of researchers. But I’ve gotta admit, I’m intrigued…