Part of my Physiotherapy degree involved sitting through a set of lectures that looked at research – the type, the different parts, ethics, data, results – you name it, I sat through it. At the time it was something I viewed as being important for my dissertation and maybe here and there throughout my career. But I never thought I would be able to use these skills and the knowledge within me raising awareness about life with chronic illness.
If you’re anything like me when it comes to new diagnosis’, medication or treatment, you might find yourself researching them to find out more information, how things work and what the side effects are. This can work both ways – you can feel completely reassured or completely terrified. So it can be helpful to know how to filter the good stuff from the bad.
There are a few different types of evidence that you can use ranging from simple informative websites, charity information, interviews and actual research papers. There is also a growing trend for input from social media platforms, such as the support groups you find on Facebook or forums that are based on “question and answer” formats.
Before I talk about evidence and research, a word of warning – most people who post online about their experience or views tend to only be giving input based on a negative experience. This leads to bias – essentially swaying a person towards one end of the spectrum.
Good Ol’ Google
Doing simple searches on Google can lead you to various websites and information pages. There is a whole world of information available to you on the internet, which is why you need to be careful.
Pages like Wikipedia can be edited by anyone who has an account, meaning that you may find some information on there that is not actually accurate or even true. Don’t believe me? When I was in secondary school, we had a teacher ask us to write an essay on some kind of animal (we all had the same animal, I just can’t remember which one it was), and to pick out those of us who just copied and pasted from Wikipedia, the teacher edited the content. They found numerous people had taken what was written on their for granted. Most Wikipedia pages are moderated these days, but be careful.
Other websites can also easily be faked. Anyone can set up a website and write whatever content they want and there is no one there to check on it. You may also find that people have doctored images or provided completely made up data, or even have completely out-of-date information.
So how do you make sure what you are reading online is correct, or how do you make sure your Google search is accurate?
- If it’s about health, make sure you stick to websites that are run by health organisations or charities, such as the NHS, Endometriosis UK, Cancer Research etc. These websites are heavily moderated and their content will be based on fact
- Check that the website or page is up-to-date. You can do this by scrolling to the bottom, where you should see the year it was last checked/edited. If it’s a forum-type site, check the date the content and/or responses were posted
- Make sure the sight address is legit – it should be simply, contain an address relevant to the content and have a padlock or other secure symbol next to it in the bar
- Figure out who wrote the content. Websites should credit the author for the content
- Does the content seem relevant, easy-to-read and make sense? If not, then it could be a load of nonsense. You’d be surprised at what lengths people go to to creat false information
Social Media Platforms
Sometimes, support groups on Facebook drive me insane. Quite a few I have been a former member of were ran by crazy-strict admin that had such tight rules any posts would be deleted in a heartbeat if they were not “acceptable” or there was fierce competition between users about “who was the sickest” or “I know best” – hence why I left! But it’s not just Facebook. Other platforms are forums like Health Unlocked, Instagram or even lil bloggers like me.
Whilst most people who are members, followers or writers of these platforms will be completely legitimate and good people, you will get the odd person who makes other peoples lives miserable by trashing their posts or making them feel irrelevant. I’ve witnessed spam be posted over and over again in some Facebook support groups, content posted clearly by people who are not sufferers but bullies and people even lie.
If you’re a member of an online support group or forum and you regularly post to get answers, make sure you get the best responses and information;
- Closed groups are better than open groups (in my opinion, anyway). Closed groups will have to approve their members before they are able to post and join in discussions, meaning that if there is anyone suspicious, they’ll be denied access.
- Take responses with a pinch of salt – I’ve experienced first hand people biting my head off over things I’ve asked in support groups (once it was a comment on someone elses posts!)
- Most people will only reply if they had a bad experience. The medical menopause is a prime example – so many people jump on posts and tell the user how bad and dangerous it was, leaving positive experiences from people like me not even close to being seen
- Report dodgy responses or users to admin, it’s important! There was one Facebook group that I was member of where a “member” was posting daily spam, click bait and links that led to inappropriate content. The best example I can think of was this one person posting huge amounts of content about how Endometriosis is a cancer – it scared some members.
The Hard Evidence – Research Articles
Research article are considered to be the golden truth in the medical world. The trouble is, is that every study, randomised controlled trial or research will have flaws and there are factors that make one paper better or more reliable than another.
Particularly where new medication is concerned, you will find that it is the pharmaceutical companies that pay for the study, therefore it is in their best interest to make it look good, meaning there is often an awful lot of bias in them. Sometimes so much so that their research papers become irrelevant.
If you’re looking at a research paper, ask yourself the following;
- Who wrote the article?
- When was the article written?
- What type of research or study was it? (randomised controlled trials are top)
- How many candidates/patients/people were in the trial? The more the better!
- How did they assess the medication/operation/topic they are looking into?
- What did they look at?
- How long were the follow-ups?
- What do the results actually say?
Let’s say you’re looking at a research paper about a new medication. You see its written by someone with no medical background at all, it was written back in the ’80s, it only compared 2 candidates and they just simply wanted to know if it worked or not. Even though the results say “it worked” in “100% of people”, really, only 2 people is pretty poor. Plus things have changed since the ’80s.
This is only an example but you get my drift.
You may find that quite a lot of people thrust research papers or evidence from studies in your face when you’re posting on social media, for example, and that’s fine – take them all and look at them, pick the best ones and go from there. But its always the quality of the study that is slightly above the results. It’s no good basing your opinion or medical decision on a paper that says it does something great 100% of the time, when actually it only looked at 1 person and was so poorly conducted.
There is absolutely nothing wrong with doing your research about something. Trust me – I’ve done it with most of my medications and treatments – but its about doing it in the best way possible to get the best possible evidence. You also have to be able to separate peoples opinions from facts (and there are a lot of opinions out there!) and be good at not letting other peoples opinions bother you.