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Written patient material tutorial
- 1. Written Patient Material Eleni Sotirakou, BPharm, MSc, ANutr
- 3. ‘Written Material’ Brochures or other printed materials Handouts Posters or charts
- 5. ‘Patient’ Definition of patient 1: bearing pains or trials calmly or without complaint 2: manifesting forbearance under provocation or strain 3: not hasty or impetuous 4: steadfast despite opposition, difficulty, or adversity 5: able or willing to bear adjective pa·tient | ˈpā-shənt Merriam Webster dictionary
- 6. Mental Health Depression, anxiety, loneliness, fear, pessimism Physical Health Pain, exhaustion, disease symptoms Medication Confusion, adverse effects, interactions Social Life Stigma, shame, exclusion Depression Pessimism Stigma Confusion Exhaustion Medical appointments Are all doctors good doctors? Are hospitals and clinics a pleasant environment?
- 8. Empathy
- 9. How does the patient feel? What could make them feel better?
- 10. Depression • Colours! • Images, cartoons, photos • Boxes, bullet points and highlighting • Words that carry a positive meaning • Prioritise patient action and motivation
- 12. Confusion • Readability level of 8 or lower (SMOG readability score) • Q/A format • Highlight or underline important concepts • Use ample “white space” to avoid a cluttered look • Use simple large-font print with a mixture of upper and lowercase letters • Simple syntax
- 13. Never overlook the power of simplicity Robin S. Sharma
- 14. Confusion • Most current scientific evidence • References information sources with dates • Reinforce with verbal instructions • Include lifestyle recommendations • Explain risks and benefits • Contains advice on when appropriate to consult a healthcare professional
- 15. • Short and concise wording • Simple syntax • Clearly states PIL objectives • Reduce content to what patients really need to know • Avoid large amounts of background information, statistical information, and technical jargon Exhaustion
- 17. Stigma Avoid anything that may promote stigmatization / include triggers
- 18. How should patient material be like? Comprehensible Concise Evidence-based Fancy!
- 21. Q/A format Photos & different colours Text box Example Bold Characters
- 22. Text box Examples Bold Characters Photos & different colours Made simple!
- 25. You might think that the sugar content of fruit means that you can’t eat it. But the sugar in whole fruit does not count towards free sugars, so it is not this type of sugar we need to cut down on. This is different to the free sugar in drinks, chocolate, cakes and biscuits, as well as in fruit juices and honey. Diabetes UK
- 28. References Andrus, M. R., & Roth, M. T. (2002). Health literacy: a review. Pharmacotherapy: The Journal of Human Pharmacology and Drug Therapy, 22(3), 282-302 Dobkin PL, Da Costa D, Fortin PR, et al. Living with lupus: a prospective pan-Canadian study. J Rheumatol 2001; 28: 2442–48 Lisnevskaia, L., Murphy, G., & Isenberg, D. (2014). Systemic lupus erythematosus. The Lancet, 384(9957), 1878– 1888. doi:10.1016/s0140-6736(14)60128-8 Mazzoni D, Cicognani E. Social support and health in patients with systemic lupus erythematosus: a literature review. Lupus 2011; 20: 1117–25 Philip EJ, Lindner H, Lederman L. Confi dence in medical care linked to depression in lupus sufferers. J Allied Health 2009; 38: 106–12 Sustersic, M., Gauchet, A., Foote, A., & Bosson, J.-L. (2016). How best to use and evaluate Patient Information Leaflets given during a consultation: a systematic review of literature reviews. Health Expectations, 20(4), 531– 542. doi:10.1111/hex.12487
- 29. References - Booklets • British Heart Foundation : • https://www.bhf.org.uk/ (website) • https://www.bhf.org.uk/informationsupport/publications (booklets) • Lupus UK : • https://www.lupusuk.org.uk/ (website) • https://www.lupusuk.org.uk/wp-content/uploads/2015/10/Lupus- Healthy-Eating.pdf (booklet)
- 30. References - Webpages • NHS : https://www.nhs.uk/ • Diabetes UK : https://www.diabetes.org.uk/ • Vegan Society : https://www.vegansociety.com/
Editor's Notes
- Hi everyone! My name is Eleni, I am a pharmacist and a recent MSc graduate as well as an Associate Nutritionist. And this is a short tutorial in which we’ll be discussing medical communication. How do we give information to patients in written form. And how can we rest assured that they got the message we wish to convey and comply with the guidelines we present.
- So this tutorial will be all about written patient material. This concept consists of two separate sub-concepts which are written material, and patients.
- Regarding written material, this could be a brochure or a booklet, it can be an infographic, a poster or a chart. Just in case you wish to see a really nice example of written patient material, you can visit the BHF website and take a look at their collection of online booklets. They are all excellent examples of how we present information to patients.
- So let’s get into the subject. And let’s things from scratch. That said, let’s discuss patients. Whom do we call a patient? What’s a patient? Take a moment to reflect. Well, I hope you didn’t go too far because in fact it’s quite easy. A patient is somebody who is being patient, who shows patience.
- This is the point where the Merriam Webster dictionary comes in, patient is a person who bears pains or trials calmly or without complaint. They manifest forbearance under provocation or strain and they are able or willing to bear. And trust me, people that live with a disease have totally earned the title of a patient.
- Those are people whose physical health is affected and they have to bear with it. Their mental health is also affected, making them feel depressed, anxious and lonely (just for the record, physical pain itself can be a cause of depression). They may need to take medication and put up with side effects. They have to attend medical appointments. At this I want you to think, are all doctors good doctors? Are clinics a nice place to visit? If these were not enough, medical patients quite often experience social stigma, exclusion and shame. So our key words would be depression, pessimism, stigma, confusion and exhaustion.
- And all of these are depicted in this cartoon. We see lab tests (you get stressed everytime you have an exam? Imagine if the result of this exam had something to do with your life expectancy or wellbeing). Then you have other screening tests. You have drugs, that can actually induce side effects or toxicity or have interactions. You have medical appointments (you know how doctors are … they will keep on telling you to cut down on sugar, stop smoking, stop drinking, reduce or increase your weight etc etc really unpleasant conversations). Then you have comorbidities. And frustration. And loneliness. And all these, can be part of one single but typical day in a life of so many people. So what do we do about it? Is there a solution? Well, it is definitely no panacea but …
- empathy is the biggest player in this game of medical communication. Allow yourself to step into the shoes of a patient. Of a person who notices physical, emotional and all sorts of life-style changes.
- Ask yourself, how does this particular individual experience this particular condition. And then try to find out what would comfort them and what you could do about this.
- People that live with a health condition tend to experience depression or mood swings. They tend to feel blue. Your aim should be to add some colour to their lives. So do it, use colours! Bright up their days. Use images, cartoons, photos, boxes, bullet points. All that in terms of format. Remember that your words matter. Use terms that carry a positive meaning. Do not let’s say, mention the word disease. Do not say for instance, omega 3 will prevent heart disease but rather say omega 3 promote heart health. Those are the compounds your heart will love. And since sinking into a bout of depression is no good for someone’s motivation, do try to make the patient feel empowered. Place special emphasis to patient action and motivation. Make them feel in control of their lives.
- In fact, that’s the spirit. Be positive and spread that positivity. Positivity can be contagious. So, think pink, create something pretty and filled with colour and bring a smile to someone’s face. That’s the power of pink, the power of colour. After this I definitely expect an endorsement from my friend Elle Woods, the legally blonde lady.
- Many patients get confused. Some of them may be geriatric patients, some may need to receive multiple drug agents all in one day (we call that polypharmacy) and some might not be familiar with medical or scientific concepts. Let me just put on a disclaimer here. I do not wish to make you think that the correct way to address a patient is as if they suffered from some kind of cognitive function impairment (although some of them may be such cases). You are however encouraged to approach them in the same way you would approach an 8 year old child. Children do not lack mental capacity. On the contrary it’s so impressive how many things they can sense. It’s the same thing with patients. To make it more direct, you can also use a Q/A format, highlight important concepts so that they will know where to focus, otherwise it’s so difficult to pick the bones out of a huge mass of material on lifestyle/drugs/diets/interactions/risks and benefits. Aim to achieve the right balance between the use of images, colours and white spaces, so that you will be able to avoid a cluttered look. Use simple font and a simple syntax.
- Because in fact there is so much beauty in simplicity. In fact, simplicity is a champion. At least when you will need to explain difficult concepts in a more a feasible way and to a non-scientific audience.
- Some additional points would be to use the most current scientific evidence, always reference your sources, use verbal instructions and practical recommendations taking into account what kind of an audience you are addressing. Explain risks and benefits but always conclude by saying that the safest way to reach a health goal is to refer to a specialised health care professional. Sometimes this is not just a certain way of achieving results but a pure necessity.
- Exhaustion is another huge chapter in the life of a patient. It may be due to the disease itself or even due to the pharmacological agents those individuals make use of. It may even be a product of depression. So this is why we wish to keep the wording short and concise as well as a simple syntax. Ideally, each sentence will have up to 15 words. Explain the reason why we are inviting our patient to read the material we created. A general rule would be to reduce content to what the patient really needs to know. And avoid the rest. Avoid offering too much theory and information especially technical jargon.
- I am repeating myself but, keep it simple. Pick the easy way. It will lead you to your destination faster.
- Finally, we’ve got stigma. The sad truth is that in many cases, disease comes hand in hand with shame. Think of mental health conditions like schizophrenia or bipolar disease, think of obesity, think of people with HIV and other STD. It shouldn’t really be like this but more often that not, those individuals do tend to feel or even become excluded because of their health condition. This is not acceptable. Of course, you’ll say, we can never be politically correct enough. We live in such a diverse world, so many different personalities, backgrounds, experiences and thus triggers. Anything can be an unintentional trigger. The answer to this is do your research, do try to empathetic, do try to gain experience, attend seminars, courses, listen to people, mingle with people, be as diplomatic as possible. We can’t be perfect, it’s not even necessary, but we can be open minded and keep our eyes wide open.
- So in a nutshell, all that we’ve spoken about boils down to this. Patient material should easily comprehensible, it should be concise, evidence-based and cute, fancy, it should be something that will grab the reader’s attention and please their aesthetics. This, is super important. This is a case where appearances do matter. A lot.
- To close this tutorial, which has begun to feel like a one woman show, I would like to present you some examples from my MSc thesis, which was the design of a new and more patient-friendly dietary booklet for lupus patients. In that framework, we took the already existing handout, published by Lupus UK and made some recommendations on how it can be improved. This is a screen shot from the 2015 handout where the authors give dietary information to vegans and vegetarians. You can see the underlined phases are absolutely science based there is nothing wrong with the content. You may even pose the video and check this for yourselves. However, the average patient doesn’t care much about the inhibition of Zinc’s absorption due to the presence of phytates in fibre or about the imbalance of lysine and methionine in plant foods. So we may need to find another way of explaining to them what our recommendations consist of.
- This is why we modify the format as well as the content. We use a Q/A format, text boxes, shorter phrases, examples, characters in bold, illustrations, colours in general but also ample white space.
- Thus making their lives easier.
- Once again you can see the power of visual content. Instead of percentages we use images. Remember, you address your reader in the exact same way you would address an 8 yr old child.
- Again you see that it’s nice to include examples and make things more clear.
- Last but not least, well definitely not least, you have this statement, fruits contain fructose that may lead to health problems such as diabetes. Diabetes UK has a different opinion on the matter, stating that those sugars are not free sugars, which are contained in chocolate, fruit juices and honey. So, by all means let’s not use fruits to the exclusion of vegetables but, ok we won’t get diabetes from fruit. Of course there might be some truth in this statement for people who already live with diabetes mellitus, but in their case the same strict rules apply to almost all food groups. That’s why we always wish to underline the importance of seeking professional and individualised consultation.
- And this our recommendation on how we could explain to patients that whole fruit may be better than juices, since, in terms of free sugar load, juices are a bit higher in sugars and calories and poorer in fibre. This image was in fact part of a bullet point list.
- Oh that was it I suppose! Thank you very much for time, I whole heartily wish you the best in your exams. Allow me to remind you to take care of yourselves and of those around you, don’t stress too much, stay safe, stay positive and the rest will eventually fall into place.