With evolving medical knowledge, there is an ever-increasing need to effectively facilitate knowledge transfer to key target audiences, especially patients and caregivers. Medical writing for patients must not only meet stringent good clinical practice standards and good publication practices but it must also communicate specific information in a clear, relevant and compelling manner. Patient-friendly writing is centered on generating content that engages, instructs and presents medical evidence, which is truly informative and is visually impactful—with use of graphs, figures and images.
IS SUFFICIENT INFORMATION PROVIDED TO PATIENTS?
High-quality tailored medical information can allow patients to become more aware and responsible for their health, and to respond better and more quickly to their health problems. With right knowledge, patients can feel more in control and effectively participate in the decision-making concerning their healthcare and life. Health professionals must exert continuous efforts to ensure that patients have access to high-quality and evidence-based information resources. However, inadequate information may increase patients’ distress, anxiety, and dissatisfaction, which may negatively affect their decision-making ability and quality of life. Below are a few case studies describing the quality of health information provided to patients.
- A total of 19 randomized controlled trials among 448 articles published were analyzed for therapeutic patient education in heart failure. Major elements required to describe a therapeutic patient education (TPE) program (patient characteristics, content of the TPE program, intervention modalities, type of educators, outcomes measures) were globally present, however other critical information i.e. health literacy, expectations regarding therapeutic education, psychosocial status, educational methodology, outcomes evaluation, and follow-up strategies, were missing in most of the studies analyzed.1
- Most of the online patient education materials from clinical/disease societies have readability levels that are far too advanced for many patients to comprehend. Several publications have recommended that patient education materials need to be made more comprehensible through use of simpler terms, shorter sentences, and the addition of pictures.2, 3, 4, 5, 6
- Many patients with chronic disease do not possess the knowledge and skills required to access and interpret appropriate health information. A pilot study in people with liver cirrhosis identified that only 54% of patients could recall being given written information by a clinician and 64% had self-sought information, most commonly using the Internet. Many patients reported difficulties understanding the material and majority wanted more accessible information. A pilot chronic disease educational booklet was well received by the study participants with 85% reporting it was helpful and 78% using it in between clinic appointments.7
TYPES OF WRITING FOR PATIENTS
A few examples of the different types of documents that are required for patients and caregivers are detailed below.
- Lay Summaries of Documents for Regulatory Submission (including Risk Management Plan public summaries), Informed Consent Documents, Patient Information Leaflets
Lay summaries are required as part of a company’s regulatory commitment. They are intended to help communicate research findings to a non-scientific audience in non-technical (lay) language. They are also useful during the research funding application process (i.e. for obtaining informed consent for participating in clinical trials), when research results are disseminated and for making research accessible to professionals in associated fields. While there are guidelines for writing lay summaries, they can be challenging to create as it involves presenting highly technical scientific information in a logical and consumer-comprehensible form.
- Patient-centered Publications
Patient-centered journals include patient-related publications from anyone involved in or engaged with research to support, encourage or deliver the patient/public voice during research processes or structures. A few examples of these journals are:
- Patient Experience Journal (PXJ), which is an international, open-access, peer-reviewed journal that includes engaging research, proven practices and a range of perspectives, focusing on understanding and improving the patient experience.
- Research Involvement and Engagement is an interdisciplinary, health and social care journal focusing on patients’ involvement and engagement in research studies, at all stages from conception to manuscript writing. This journal is co-produced by key stakeholders such as patients, academics, policy makers and service users.
- Patient Education Material
Advancing health literacy has the potential to improve patient outcomes. Patients are increasingly using the internet as a source of information for medical conditions. Various disease societies develop and distribute both detailed and easy-to-read booklets intended to help patients and caregivers communicate with healthcare providers about their treatment and support needs. For example, having a patient education leaflet or relevant online content allows a doctor to connect with more potential patients and establish the importance of their service in the healthcare industry.8
PARTICIPATORY APPROACH FOR PATIENT COMMUNICATION
Patient-centricity or a participatory approach with equal rights to healthcare delivery system is one of the hallmarks of a transforming healthcare scenario. Evidence supports positive associations between physician communication behaviors and positive patient outcomes, such as patient recall, patient understanding and patient adherence to therapy. Patient-physician communications in medical encounters help in fostering the relationship; gathering information; providing information; making decisions; responding to emotions; and enabling disease-and treatment-related behavior. When researchers get closer to patients, significant conversations develop about the priorities for patients, which in turn may lead to new areas of research, for example patient-focused research related to living with the condition.9
Public involvement has been reported to have had an impact at all stages of the research cycle such as project design, recruitment, data collection, analysis, writing and dissemination. There have been few reports of the impact of public involvement on writing research publications, which in part reflects the fact that users are rarely involved at this stage of research.10 One researcher reported that incorporating users’ conclusions into their final report made it much more impactful.11 Researchers working in the field of disability research have reported on the benefits of seeking input from the public when developing written materials. It makes the information much more useful to the target audience.12
CREATING EASY-TO-READ MATERIALS FOR PATIENTS
Below are some guidelines for writing easy-to-read material for patients.
- Think like a patient: Writing in an easy-to-read manner is a skill. It takes years of experience to make it part of everyday writing habits. For this, it is important to understand the need and relevance of the content to the target audience.
- Write simple: Layman medical writing is a difficult see-saw to straddle at times. It is better to write, ‘If you come close to this chemical, it could make you sick’ than ‘Exposure to this chemical could cause adverse health effects’.
Explaining the role of correlation and causation to patients and caregivers can also be tricky. For example, an action or occurrence can cause another (such as smoking causes lung cancer), or it can correlate with another (such as smoking is correlated with high alcohol consumption). If one action causes another, then they are most certainly correlated. But just because two things occur together does not mean that one caused the other, even if it seems to make sense.
- Do not assume: Make sure the information you provide answers the most common and basic questions patients would ask. The writing should encourage the patient to ask pertinent questions to their physicians.
- Inform readers: State clearly the actions you want your readers to take. Use concrete nouns and an active voice.
Write: To avoid local infection at the injection site, follow these rules: Use a new sterile syringe and sterile needle to draw up medications while preventing contact between the injection materials and the non-sterile environment. Proper hand hygiene should be maintained before handling medications.
Don’t write: Follow aseptic technique for administering insulin injections.
- Use analogies that are familiar to your audience.
Write: Feel for lumps the size of a pea
Don’t write: Feel for lumps about 6 to 7 mm in diameter
- Maintain balance of text and visuals as visual aids can assist that patient.
The best way to ensure easy-to-read materials is active patient/public involvement and contribution in all kinds of patient-related writings. Readability testing is one of the ways to ensure comprehensibility. All drug patient information leaflets (PILs) in the EU & UK are required to go through such user testing.
Effective medical writing for patients ensures the audience retains a high proportion of the information presented. Improved patient understanding results in increased recall of information, patients’ satisfaction, adherence to therapy, and better health outcomes. Patient-centricity moves away from the notion that the patients (although the epicenter of healthcare) should remain a passive recipient with little or no say in the overall management, to providing an active and impactful voice. Likewise, patient-centric medical writing is a key factor for making this a reality.
1 – Albano MG, Jourdain P, De Andrade V, Domenke A, Desnos M, d’Ivernois JF. Therapeutic patient education in heart failure: do studies provide sufficient information about the educational programme? Arch Cardiovasc Dis. 2014 May;107(5):328-39.
2 – Eltorai AE1, Sharma P, Wang J, Daniels AH. Most American Academy of Orthopaedic Surgeons’ online patient education material exceeds average patient reading level. Clin Orthop Relat Res. 2015 Apr;473(4):1181-6.
3 – Waryasz GR1, Gil JA1, Chiou D1, Ramos P1, Schiller JR1, DaSilva MF1. Patient Comprehension of Carpal Tunnel Surgery: An Investigation of Health Literacy. Hand (N Y). 2017 Mar;12(2):175-180.
4 – Hansberry DR1, Agarwal N, Shah R, Schmitt PJ, Baredes S, Setzen M, Carmel PW, Prestigiacomo CJ, Liu JK, Eloy JA. Analysis of the readability of patient education materials from surgical subspecialties. Laryngoscope. 2014 Feb;124(2):405-12.
5 – Gulati R1, Nawaz M2, Lam L3, Pyrsopoulos NT4. Comparative Readability Analysis of Online Patient Education Resources on Inflammatory Bowel Diseases. Can J Gastroenterol Hepatol. 2017;2017:3681989.
6 – Weiss KD1, Vargas CR2, Ho OA3, Chuang DJ3, Weiss J4, Lee BT5. Readability analysis of online resources related to lung cancer. J Surg Res. 2016 Nov;206(1):90-97.
7 – Hayward KL1,2, Horsfall LU3,4, Ruffin BJ3, Cottrell WN5, Chachay VS6, Irvine KM3, Martin JH7, Powell EE3,4, Valery PC8. Optimising care of patients with chronic disease: patient-oriented education may improve disease knowledge and self-management. Intern Med J. 2017 Aug;47(8):952-955.
8 – Making patient relevant clinical research a reality. BMJ 2016;355:i6627.
9 – Association of Medical Research Charities, Natural Ground: Paths to patient and public involvement for medical research charities. AMRC, October 2009. Accessed on 10th September.
10 – Smith, E., Ross, F., Donovan, S., Manthorpe, J., Brearley, S., Sitzia, J. & Beresford, P. (2008) Service user involvement in nursing, midwifery and health visiting research: a review of evidence and practice. International Journal of Nursing Studies, vol. 45, no. 2, pp. 298-315.
11 – Sutton, J. & Weiss, M. (2008) Involving patients as advisors in pharmacy practice research: What are the benefits? International Journal of Pharmacy Practice, vol. 16, no. 4, pp. 231-238.
12 – Rosenbaum, P. (2005) From research to clinical practice: Considerations in moving research into people’s hands. Personal reflections that may be useful to others. Pediatric Rehabilitation, vol. 8, no. 3, pp. 165-171.