Should you search your symptoms?

Health information can be found in so many different places online – videos, articles, company websites, personal blogs - but is it helpful?

We spoke with Dr Rachna Chowla, General Practitioner and Joint Director of Clinical Strategy at King’s Health Partners, to find out what it really means for patients to have 24/7 access to this content and Chantelle Kirk, service user and member of KHP Neurosciences advisory group, shares personal experiences with us of how they use the internet to find information and the role it plays in managing their health.

Should we search our symptoms? 

Dr Rachna Chowla: There are a lot of positives to searching your symptoms! Websites like ‘patients like me’ are excellent for helping people find information, peer support, validation, and hope. I believe people seeking to understand their bodies and minds more to self-care and pre-empt problems is a good thing. 

In diabetes we know that many people - when they are first diagnosed - experience distress. When someone gets diagnosed it's stressful anyway. Being told you've got a long-term condition, what might happen and what to do about it all at once – it can feel impossible to take it all in. So, there’s a real place for people to take their time to go through all the information - if that happens at home, that's fantastic! We would love to do some of that in primary care, but we don't always have time. 

When patients feel free to look for information themselves and want to be informed, that's part of being empowered in terms of caring for themselves. To give an example, yesterday my foot was hurting, I knew what the problem was, so I searched online. I found a YouTube video through an NHS website that showed me an exercise I could do at home. These resources can be helpful when you are looking in the right places. 

Looking things up can create feelings of anxiety, but that's when talking to a GP or a nurse in practice, or looking it up on an NHS website can be helpful. 

Chantelle Kirk: Having Functional Neurological Disorder (FND) and other comorbidities means that I have an umbrella of many symptoms every day. It has been extremely beneficial for me to look up my symptoms and evaluate whether I need to visit my GP for advice, or by studying reviewed academic papers on FND online, consider whether my new symptom is a result of a very complex neurological disorder and perhaps wait and see what I can do to help myself at home. 

What are some of the negative consequences of searching symptoms online? 

Dr Rachna Chowla: On the internet you have articles not backed by evidence placed right alongside evidence-based resources. It’s the same on social media where people often search for health information. With such a wide variety of information available, how is someone in the community supposed to figure out what is based in evidence and what is opinion? Deciding where to go for reliable information can be a challenge. 

Chantelle Kirk: Knowing how search algorithms work is vital. You need to understand that reading misinformation will only push forward more misinformation which can cause health anxiety and stress.  

How can people find reliable health information? 

Dr Rachna Chowla: As a GP I use patient.co.uk which has curated patient leaflets and is integrated into our computers systems in the practice. NHS Choices is another helpful site with lots of useful evidence-based content. That's where I tend to guide my patients because it's a minefield otherwise and there is some stuff out there that's not helpful and not right. 

Chantelle Kirk: It is important to read the right information. This can be done by checking the sources of the information available [which helps] to ensure that I stick to medically peer reviewed information such as that provided by the NHS. 

How does patient research impact GP appointments? 

Dr Rachna Chowla: In medicine it's about laying things out on a table rather than trying to make someone think in a different way, because I'm not sure that always works. I look stuff up much more than I used to and I do it in front of my patients. I think when a patient comes in and tells you they’ve looked something up, it’s important to honour their curiosity. We need to be open to hearing what they have found, what it means to them and seeing where it leads.  

I had one patient who brought in paperwork about a urology specialist they found online. This patient’s symptoms were having a huge impact on their quality of life and even being able to work. They asked about seeing the specialist privately and wanted to know what I thought, so I looked through the information with them. The specialist was NHS trained but working privately and very specialised in this specific area of women’s urology. I advised my patient that it would be perfectly reasonable to explore things with them. I'm not sure I would have found this specialist on my own, but my patient did and with treatment from this specialist, she's hugely better now. In this case I was so pleased that my patient had shared her concerns and research with me so that I could support her in this way. 

What about when all the results seem negative? 

Dr Rachna Chowla: We need to do more about health literacy to make all this information easier to understand. We talk about dental health in primary school and sexual health in secondary school, but we don't talk about emotional regulation, mental health, relationships, and physical health. 

One way King’s Health Partners is trying to address this is through Vital 5 screening, which aims to help people understand their health status - so they can be active participants. Enough of sitting passively with the doctor telling you what to do - we want to work in partnership with our patients, and that comes with being informed.  

In blood pressure - which is my area within the Vital 5 – this is a health problem that often doesn't even have any symptoms. What do you do when something doesn't have any symptoms? That's where I think health literacy comes in. Helping people know about the basics of health and which health checks we should all be having done and when, including various screening checks. NHS health checks are available to everyone over 40 to help screen for a raised blood pressure, but if we're not aware of problems like blood pressure, when they can develop, nor the importance of it, it’s then hard to take up the health check. So, I think health literacy and the availability of information on the Internet are really closely linked.  

Interestingly, the reporting of King’s Charles III’s recent prostate problems in the press led to a more than a 1000% increase in visits to the prostate pages on the NHS website. Highlighting prostate cancer for all men is really important, but especially given the high prevalence of prostate cancer in particular ethnic groups – 1 in 4 men of Black African and Black Caribbean origin will develop prostate cancer – showing us the powerful role health awareness and the internet can play in helping people be informed about their health to take relevant steps to access care.