We are in an age where information is more readily accessible than ever and to an extent this has been harnessed by healthcare providers but for all the service users interviewed here, changes can be made to enhance their experiences. Sue Farrington, chair of the Patient Information Forum (PiF) believes that NHS providers must ‘ensure patients are getting access to the right information from day one’.(1) In the context of challenging political and economic circumstances (2)looking at how people are accessing health information is of increasing significance.
Presented here are the stories from 11 individuals with regard to health information. Below is a comparison of some common themes. Also highlighted are the differences in people’s thoughts and experiences with accessing health information as patients, carers and National Health Service users. It is fair to assert from all from these interviews that changes can be made to make health information more accessible.
These videos were created as part of the Patient Information Forum (PIF) project to develop a best practice toolkit that supports the creation of health information that works. The Toolkit sets out key steps for producing high quality information that is accurate, clearly communicated, has impact, and involves users in its development. It links to the evidence behind the best practice, and resources that will support people to implement it within their work. www.pifonline.org.uk/toolkit
The launch of the Toolkit followed a report published by PiF and MHP Communications that found 32% of people with long term conditions find it difficult to access trustworthy information on their condition, and 1 in 5 people don’t feel they have enough information to feel confident discussing decisions about their own treatment with their doctor. This is something the stories below echo. See the link below to look at the toolkit.
What did people say about health information ?
Time and Energy
As Henri recounts in his experiences ‘there’s so much information out there when you start looking’, so much so that it may appear to ‘become a huge mist, a fog’ but he continues to say that once he sourced useful information it can ‘really save time and energy’ and provide support. Henri specifically refers to ‘a lack of information for people who are either service users or carers who are in roles for an extended period of time.’ Whilst information may prove ‘very good’ initially, it is ‘very bad for someone in a role in an extended period [and] that is when you tend to be more lost.’
For Francine, using search engines and the internet to find health information saved time waiting for appointments with her GP. Similarly time was a factor for Natalie, after her mother was diagnosed with terminal cancer she talks of going ‘into panic research mode to try and get as much information as possible about the diagnosis and opinions’. Time is certainly a factor as Anna feels like GPs and other medical services are ‘overburdened’.
NHS materials ‘not good enough’
Indeed for many, other people’s opinions are what end up being most helpful to them as was the case also for Mike who has rare eye conditions. He explains finding internet forums where people are talking about their experiences with the same condition was ‘a huge breakthrough’. But he also expresses dismay that internet forums found using search engines is ‘not really where the information should have been’ and suggests that NHS leaflets did provide a starting point but were ‘basic’ and ‘not good enough’. Others like Anna were also wary of materials provided on the NHS website or other areas on the internet, fearing that they could be inaccurate.
Additionally, there may be another problem that NHS materials that are available are not well publicised enough. Annie, for example knew that there was an NHS helpline, but did not know what the number was. On the other hand she found a leaflet given to her at a hospital to be ‘really reassuring’ and also stated that she ‘could go on to the website for more information, which was really helpful’.
Perhaps more worryingly still, Pauline tells of being given lots of leaflets from her hospital when she was first diagnosed with type one diabetes where she found information to be ‘contradictory’ whereupon she found herself in a dilemma over which course of action to take. This instance is where she turned to the internet as a ‘backup’, looking for the most popular answers to specific queries.
By far, the most common points mentioned were those pertaining to accessibility of information. This covered areas from simple presentation errors, suggestions for alternative formatting and use of language. Some suggested that there needs to be a more tailored approach in the creation and distribution of health information. Such as for Black and Ethnic Minority groups, for carers or service users over an extended period and for conditions such as dementia.
Of the aforementioned, use of accessible language was the most frequently mentioned feedback from the 11 interviewees. Many say they would like to see simple, clear language in health information and most also feel that current resources can be overly dense with technical jargon and complex medical terms. Some, like Pauline suggest that sites should feature the important key words or terms but they should also be accompanied by accessible descriptions. She sees her type one diabetes as ‘a life changing disorder’ that affects her whole body, so therefore understanding the information, she feels, is what ultimately keeps her alive.
As such, some suggest that more can be done to make health information more compatible with different learning styles. Ishmael and Trine both mention wanting more range in resources that could include the use of diagrams, whilst Annie says that ‘video clips would also be helpful.’
Donna draws on her experiences as a community empowerment worker with Black and Ethnic Minority groups, asserting that many organisations do not consider their specific needs when materials are made. She puts believes a more effective means would be to couple physical information with face-to-face interaction. In the same way, Patrick has found that the methods by which health information is distributed does not properly take into account the requirements of its target audience. He explains this with reference to his father who has dementia, so even though he continually gets letters and leaflets through his door, his father may just rip them up and put it in the bin. In such circumstances, he thinks it will be better to deliver this information to carers.
Drawing on this, Ishmael implies that receiving information through the letterbox or at the hospital is one thing, and actually reading it is another. He says information can often be ‘tedious’, only touching the surface. Henri also calls for more literature of greater depth to support him in a role as a carer for an extended period of time.
Charities and Organisations.
Several of our interviewees labelled resources from specific charities and relevant organisations as important and ‘useful’. For example, Pauline explains that to find a website of a relevant organisation (in her case, Diabetes UK) that has lots of pages of information ‘is fantastic’ and ‘so useful’. Henri used the Alzheimer’s Society website and Donna found Prostate Cancer UK to have ‘really good materials’.
For Trine, Macmillan was ‘very good’ for him to use as a carer for his partner’s cancer. Similarly, in her experiences caring for her mother with terminal cancer, Natalie found the internet to be ‘incredibly useful to research support or charities in that area’. She felt that these resources were the best point of reference for further information on how to manage specific conditions and in terms of gaining professional advice in place of her GP whom she felt ‘hasn’t really the time or resources to do that’. Interestingly, Natalie further departed from her GP and moved towards finding alternative homeopathic therapies.
By the same token, Anna felt like she didn’t ‘want to bother the GP’ so used the internet to research alternative or herbal therapies and not having to necessarily go down the medication or prescription route. She felt positive that alternative health information gave her an option to think through yet accepted an eventual return to the GP.
Donna cites her experiences as a community empowerment worker to talk about health information with particular reference to BME groups. She suggests that a more tailored approach is needed when creating health resources.
Anna uses health information for minor health complaints like eczema and whiplash and expresses uncertainty about whether to go to the GP. She says that there can be changes made to health information that can ease referrals to other medical practitioners.
Francine uses search engines to find health information and save time waiting for appointments at the GP. She suggests that short words and simple texts are what makes information better.
Annie talks about the sort of health information she had when dealing with her concerns about breast cancer. She wished she had received physical information initially about what steps she should be aware of.
Henri talks about accessing mental-health information as a carer for his father and mother. He would like information that reaches appropriate depth for conditions that are focussed over an extended period of time.
Ishmael shares his thoughts about the accessibility of health information resources; suggesting that they should make the addition of diagrams and should be broken into steps given different eventualities.
Mike suffers from a number of long-term conditions that are mostly to do with his eyes and shares his perspective on accessing information specific to these. Amongst other things, he mentions simple presentational errors such as text that disappears into backgrounds and font that is too small.
Natalie explains how she used health information after her Mother was diagnosed with terminal cancer. She felt that the GP could only provide limited resources and wasn’t able to commit the time she required in these circumstances.
Patrick is a carer for his father with onset dementia and talks about the stages of information he accesses through a personal healthcare plan. For him, the distribution of health information needs to consider the requirements of its intended audience.
Pauline tells her story of being a diabetic and navigating relevant information. She advocates sites that would include both technical terms alongside more accessible language.
Trine recalls how he has accessed health information after his partner was diagnosed with terminal cancer. As a carer, he would like to have access to more information that is directed toward carers and would also like to see a variety of leaflets that filter out jargon and use diagrams.
MACC, the ICR Social Licensee in Manchester, asked its Community Reporters for their views and recorded their replies
1. Price, C. (2015). Most patients with long-term conditions ‘unprepared for personal health budgets’. Pulse. [online] Available at: http://www.pulsetoday.co.uk/20009595.article#.VYPxKvlViko [Accessed 19 Jun. 2015].
2. BBC News, (2015). NHS facing ‘very, very big challenge’. [online] Available at: http://www.bbc.co.uk/news/health-33011615 [Accessed 19 Jun. 2015].
I fully agree Patient information very limited from GP. I also with all the points from people feedback in this article. When my Husband was diagnosed with terminal Cancer trying to get hold of the Macmillan Nurse was so difficult. Although my GP was very good and did home visits when I requested giving feedback was very limited. I felt quite helpless and lonely.