Content insight / User experience

Digital insight for health charities (patient perspective)

Recently I found myself being a ‘service user’ for a health charity which made me question a lot of what I thought I knew about user experiences.

As a digital bod, you try to put yourself in your audiences shoes. But when I was ‘the user’,  and I wasn’t being logical, but was acting on instinct, I learnt this:

  1. IA, UX and design were irrelevant
    I didn’t want to search a site reading lots of different articles. I willingly sat and read the longest articles, and devoured information. I wasn’t on a ‘user journey’.
  2. I did read FAQs
    When I have my Editor hat on, FAQs seem like a lazy way of presenting content you can’t be bothered to turn into articles. But as a user, they were invaluable. I read every single one of them.
  3. I rejected communities
    I wanted to know absolutely everything about what was happening to my body, from a credible source. I rejected forums as ‘chit chat’ and ‘virtual hugs’ without any useful information.
  4. I cared who the author was
    I wanted my information written by a nurse. Even better if it was written by a doctor, consultant or medical expert. In times of desperation we even read academic papers.
  5. I needed to talk to humans
    Despite all the reading I still had questions. I needed to be reassured by an expert who’d seen this a hundred times before. I needed to bend an ear, and hear a human voice.
  6. Poor service peeved me
    I worked up courage. I called the helpline. I needed to talk. No one answered. I left a voicemail. No one’s called back. I put myself out there. And I’m still hanging. If you can’t deliver on a service, don’t offer it.  If you don’t have the resource to man phone lines 24/7, tell people on your site, and on the voicemail – set expectations.  By not meeting my expectations, they’ve lost their credibility.
  7. I realised when I was moved to donate…
    If at the end of the article it said: “We hope you found this useful. We are a charity and our articles are written by volunteers. Please donate, so we can continue to provide information to others”, I would have done.
  8. … and when I wasn’t
    Despite knowing this charity is small and under-funded when I felt let down by them (because no one answered the phone line, or an article was incomplete), I felt ‘against’ them. I wasn’t moved to donate, or ask a cause-less marathon running friend to fundraise for them. A disgusting attitude, especially from someone who works with charities, maybe. But your health is an emotional issue – there is no logic.
  9. But I’d still recommend them
    Like I said – there’s no logic. It’s not a pretty site. But the content speaks for itself.  For me, it was timely, relevant and useful. ‘Nuff said.
  10. I preferred a specialist health charity website to NHS choices
    NHS websites can be very helpful, and they’ve come a long way. But you can get information overload, or no information at all. A website dealing with just your issue gets my attention every time.
  11. Conflicting information panicked me
    If the NHS and the charity differed on information, I felt panicked – something that neither organisation was aiming for.
  12. Friends and family mattered
    Friends and family are shockers when you’re ill. They all react differently. They all think they’re being supportive. They have questions. You don’t have answers. You wish you could shove some info under their nose. A lot of health charities treat this sensitively: “We know this is a difficult time”. What I wanted was to tell my friends and family to read something more like “Obvs this is a difficult time. Shut up. Do not offer opinion. Don’t go on about the future. She’s not listening. “ etc.
  13. There was a structure to the information I wanted
    Panic about what’s happening now > panic about what treatment means > panic about long term side effects. Structure your info around that.
  14. Not answering the phone was a missed opportunity
    If someone had answered the helpline, I would have given my email address for further info. In a month or so. If they’d asked me to show my appreciation by donating, I would have.
  15. Hospitals really should have free wi-fi

There must be lots of people who work in charities who have also been the other side of the fence. What did you learn?

Elena Plaiter

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One thought on “Digital insight for health charities (patient perspective)

  1. Thanks for this interesting blog Elena – just came across it. I also work in digital for a health charity and lately, for the first time, find myself seeking information from various other health charities as a ‘service user’, not for me but for a close family member.

    Some of the things you’ve experienced I’ve also experienced, although other things are not the same – to be expected. It’s definitely making me think in a different way about the way we provide information at work though.

    A few things I’ve learnt so far:

    1. If I ask a question I don’t want to be directed to a really long page or booklet and try and search for the answer somewhere within it. Most of the time, the reason I’m asking is because I’ve already read the whole of the booklet several times and I want clarification on a specific point. I’m happy to be given that link for more information once my original question has been answered, but not in place of that answer.

    2. I want clear information on what the charity does and, more importantly, how it differs from other charities that seem to be doing the same thing. Which is the most credible source? How can I find this out?

    3. Related to the above, I’ve found lots of useful information on various websites and I’d like to make a donation in appreciation of this. But I can’t support them all and I haven’t decided yet which I’d like to support the most. Do I support the massive charities that already have lots of money, or the smaller charities that don’t have as much support?

    4. I am the only one in my family who seems interested so far in getting any information from online sources. Everyone else is worried about a) the information being incorrect or misleading because ‘anyone can bung anything up online’ – even after I’ve tried to explain which sources will be reputable and why, b) too scared/not ready to look (fair enough), or c) think that the doctors will give us all the information we need to know and if they miss anything out it’s probably for good reason and everything will probably be fine in the end.

    5. It’s a bloody good job that health charities exist given the lack of communication from some (not all) of the medical professionals involved. Even the good ones can’t possibly give you every single piece of information. And the bad ones are neglecting to mention vital things that you then discover by accident somewhere else. And none of them mention much, if anything, about getting support through charities.

    Being on the other side of the fence is still quite new for me and I suspect I will learn lots more as things progress. Hopefully I can apply some of it to what I do at work too.

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