With research revealing that half of adults say they struggle to access trusted health information, effective communication between healthcare professionals and patients is vital. Kathy Oxtoby looks at how to best support patients to manage their conditions once they leave hospital through effective signposting to credible and reliable health information.
In these digital days, health information seems easier to access than ever. Less clear, however, is whether that information is evidence-based, trustworthy, safe and of high quality.
‘Misinformation and disinformation are making it increasingly difficult for people to find credible health information,’ says Sophie Randall, director of the Patient Information Forum (PIF).
Indeed, PIF’s recent survey with Ipsos, which forms the basis of their ‘Knowledge is Power’ report, found one in two adults find it difficult to access trusted health information, while one in 10 had been impacted by misinformation.
‘It is important to remember that a significant minority of people are digitally excluded and lack the skills, motivation, data or devices to search online independently for health information,’ says Sophie. ‘This makes it really important for healthcare professionals to signpost people to trusted information.’
This is certainly of note as eight in 10 respondents said better access to credible health information would improve their health management.
But providing information to patients is only half the battle. Not all patients will value the same types of information, the ways in which they best consume information will differ, and the interpretation of information will also vary between individuals.
So, what should healthcare professionals do to ensure they are supporting patients in the best possible way?
Empowering patients with health information
Chris Mackie, director of digital at the Health and Social Care Alliance Scotland, says it’s important to think about what ‘good’ looks like in terms of health information access.
‘Getting it right means getting information early, and that means potential harmful health outcomes being avoided,’ he says. But he notes that there are problems with having both ‘too much, or not enough information’, so finding the balance is crucial.
Dr Liz O’Riordan is an author and former breast surgeon who has spoken widely about her own experiences with breast cancer.
‘[As a patient], your medical team give you information about the treatments you’re going to have, and you get a lot of leaflets that you might never look at,’ she says. ‘However, when you go home and start living your life with your illness, you have lots of questions, such as “What to eat?”, “What’s normal?”, and how to cope with side effects.’
Bringing together her professional and patient experiences, she says providing patients with information about side effects they may experience and how to deal with them can be particularly empowering.
‘[It makes patients] feel in control and that you do care about them,’ says Dr O’Riordan. ‘If you signpost them to what’s going to happen, and how to cope, what to do, and who to call if they’re worried, it makes things bearable and liveable.
‘It will also improve drug adherence – telling patients these are the side effects, they’re normal, they’re not nice, but these are the things you can do to cope.’
In making sure this information is covered, ‘your patients will be happier, you’ll get better results, and it will save money in the long run’, she adds.
The risks of social media and health information
Sophie estimates that ‘even people with complex needs are only likely to spend 10 hours a year with health professionals’. There’s only so much that can be said during that time, so additional information is required to help them for the other 8,750 hours.
Having the internet at patients’ fingertips can fuel an element of curiosity about their condition and a desire to gain reassurance and validation that can be difficult to ignore.
‘Patients want certainty and hope, and they want to know how to live, not to just be alive, and that’s not the kind of information you would ask your doctor,’ says Dr O’Riordan. ‘Patients are now turning to social media and online to get that information.’
But she is ‘stunned’ about how much misinformation is available, and at how quickly that misinformation space is growing.
A recent study from City St George’s, University of London revealed, for example, that 81% of cancer cures discussed by content creators on TikTok were fake and did not contain legitimate medical advice.
And while Sophie says, ‘people are less likely to trust information on social media’, the sheer quantity of information available to those who are digitally able can be overwhelming and, in some cases, damaging.
‘The worry is patients will get medical information online that will do them more harm than good,’ says Dr O’Riordan. This could be physical, emotional or even financial harm.
For health professionals, ‘your patients aren’t going to do as well as they should, you may get worse results and you can’t help people the way you want to’, Dr O’Riordan adds.
In such cases, advise about the risks of social media and online misinformation and instead suggest relevant charities or patient organisations for patients to access further information.
Patient organisations and charities
The Knowledge is Power report found only one in 10 UK adults with long-term conditions are signposted to patient organisations, meaning the vast majority of people are missing out on what could be invaluable continued support.
‘Everyone should be signposted to clear, usable health information to help them practice self-care,’ says Sophie. ‘People with long-term conditions should also be signposted to the specialist information provided by health charities and patient organisations to help them to self-manage. This can be particularly crucial in the rare disease space.’
In fact, people who access trusted health information from specialist health charities reported being more confident to self-manage long-term conditions, ask questions in appointments and take part in shared decision-making.
‘Importantly, people felt much less isolated and alone when they were involved with health charities’, Sophie adds.
As such, given the ‘toxic information environment, the new challenges of artificial intelligence (AI) and the likely changes to the health system, credible health information should be integrated into care pathways. This must include signposting to national health charities’, she says.
Dr Melanie Dalby, member of the Royal Pharmaceutical Society (RPS) Hospital Expert Advisory Group, says pharmacy staff will likely be aware of organisations such as Macmillan Cancer Support for cancer care, but ‘they may be less aware of smaller organisations and the information material they offer’.
Doing research about charities and patient organisations relevant for the most common conditions, as well as for specific patients with less common diseases, can be useful for developing a curated reference tool for consultations.
Focus on holistic advice
According to Dr O’Riordan, the essential information health professionals should signpost patients to includes side effects, risks and what to expect from their condition – and this is a bare minimum.
‘Digital signposting is key,’ she says. ‘You need to digitally signpost patients to helpful online resources that will help them get their life back and learn to live with their illness.’
Dr Dalby warns that time constraints play a role and ‘pharmacy staff are more likely to focus on the immediate clinical needs rather than directing the patient to broader health information’.
But it’s here that healthcare professionals need to think beyond their specific role as a doctor or pharmacist providing medication.
‘Look at what has happened to the patient before they arrived at your door that has contributed to their condition and what could help them after they leave you,’ says Chris. ‘It’s not just about taking the pills that you have prescribed, but what would help the patient’s life more generally. Looking at the whole person is important.’
Healthcare professionals should consider trusted information sources ‘and have those at your fingertips to pass on to patients’, says Chris.
As a starting point, they can look for the PIF TICK on health information provided by PIF’s 150 certified organisations and healthcare professionals. These organisations can be found using the PIF TICK directory.
‘The PIF TICK credibility mark shows information is evidence based, up to date and easy to use and understand,’ says Sophie.
The Knowledge is Power report revealed that two in three UK adults said independent verification of health information would increase their trust. This is what the PIF TICK strives to achieve with its 10-step accreditation process for NHS, charity, voluntary and private sector organisations and, importantly, individual health content creators creating and publishing health information.
Timing health information signposting
Information should be signposted throughout the patient journey, says Sophie, but there are obviously times of high demand for information. ‘These include at the point of diagnosis, when making treatment decisions and at end of life,’ she explains.
Dr O’Riordan says that it’s important to acknowledge that ‘patients want different information at different points, and every patient is different. ‘By giving information at every point of contact you’ll never miss anybody,’ she advises.
Everyone has the right to information they can understand and use. But it is even more important for those already at risk of health inequalities.
‘To ensure information reaches those who need it most, we need to work with users to tailor information. This includes making sure it is accessible, uses plain language and is culturally appropriate,’ Sophie says.
Victoria Taylor, head of clinical support at the British Heart Foundation (BHF), says the charity has been ‘working hard to improve the accessibility of our information whether that is through spoken pages, easy read booklets for people with learning disabilities, information available in multiple languages and generally working to make sure our information is as easy to read and understand as possible’.
If patients are not digital or health literate, healthcare professionals should look at obtaining support for them through a family carer, a Community Links Worker or other role, depending upon what is available locally, Chris says.
Multidisciplinary collaboration and training
Information flow and record keeping between multidisciplinary team members is important so that everybody knows what is happening with the patient, what individual team members are doing to support them and what signposting has been suggested.
‘You want people to be on the same page,’ says Chris, and this can help avoid duplicating information, which is pertinent in pressurised healthcare environments.
PIF believes national governments should support development of a health literacy-friendly NHS. This includes training in information provision for healthcare professionals.
‘We are also calling for NHS organisations delivering care to have a dedicated lead for health information mandated,’ explains Sophie. ‘This should be resourced to ensure consistent and effective delivery of information meeting national standards.’
From a system perspective, credible information from certified sources ‘should be embedded in the NHS App and face-to-face interactions across the NHS’, she adds.
The future of health information access
For Chris, ‘the future of health information is digital’, and much of that will be via AI. ‘The future will see these technologies really improve with a view to complementing traditional, in-person health services,’ he says.
And Dr O’Riordan agrees, saying: ‘Patients are looking for information online, whether you want them to or not. AI is growing at a huge speed and can be a very good tool. And healthcare organisations will start creating their own digital resources.’
Emerging technologies, such as AI, present lots of opportunities, such as increased personalisation in what information patients receive and how they access it, but it also comes with challenges.
‘It’s important that healthcare organisations work together and share what we learn with one another as we trial new approaches, to make sure we can realise potential benefits in a way that gives patients confidence,’ Victoria says.
Health information access is ‘a complex, but not impossible problem’, says Chris. ‘It’s about education, digital literacy, health literacy, systems change and workforce development.
‘But most important are the relationships patients have with their doctors or pharmacists. If trust exists, then good information can flow.’
Dr Dalby stresses the importance of always speaking to the patient and/or carer to understand their preferences regarding health information. ‘Ensuring information is accessible, reliable and tailored to their needs is key to providing effective healthcare support,’ she says.
Tips for signposting health information
When it comes to practical tips, Dr O’Riordan says healthcare professionals should ask patients at a one-year follow up clinic what information they used to support the management of their condition and what they found useful. From this information, she suggests making a QR code for patients to access resources sourced from other patients.
And she advises health professionals to visit major charity forums to see the questions patients are asking. This will ‘open your eyes about the kind of information they are looking for’ so you are better equipped to help, she says.
Returning to her point about medication side effects, Dr O’Riordan’s final message is simple: ‘If the treatment you are giving a patient causes side effects, please tell them how to cope with them. And remember, patients’ lives continue when they leave your clinic. So, what can you do to help them?’
This article was originally published by our sister publication Hospital Healthcare Europe.
