Medical writing for patients: An important niche

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对于患者不仅符合严格的良好临床实践标准和良好的出版物实践,而且还必须以明确,相关和令人信服的方式传达特定信息。患者友好的写作以生成涉及的内容为中心,指示和提出医学证据,这是真正的信息,并且在视觉上有所影响 - 使用图形,图形和图像。

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.

Casestudies

  • 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 thedifferent types of documents患者和护理人员所需的是下面详述的。

  • 监管提交文件(包括风险管理计划公共摘要),知情同意文件,患者信息传单的摘要
    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
    患者为中心的期刊包括患者相关的出版物,任何人参与或参与研究,以在研究过程或结构期间在研究过程中进行支持,鼓励或提供患者/公众声音。这些期刊的一些例子是:
    1. 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.
    2. 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
    推进卫生素养有可能改善患者的结果。患者越来越多地使用互联网作为医疗条件的信息来源。各种疾病社会开发和分发详细且易于阅读的小册子,旨在帮助患者和护理人员与医疗保健提供者沟通其治疗和支持需求。例如,拥有患者教育传单或相关的在线内容允许医生与更多潜在的患者联系,并在医疗行业中建立其服务的重要性。8.

Participatory approach for patientcommunication

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.

据报道,公众参与对研究周期的所有阶段产生了影响,如项目设计,招聘,数据收集,分析,写作和传播。公众参与写作研究出版物的影响很少,部分反映了用户很少参与这个研究阶段的事实。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

以下是为患者编写易于阅读的材料的一些指导方针。

  • 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.
  • 写简单:外行书写是一个难以看到的跨越跨越时代。最好是写,'如果你接近这种化学品,它可能会让你生病“暴露于这种化学物质可能导致不良健康影响”。解释相关性和因果关系对患者和护理人员的作用也可能很棘手。例如,动作或发生可能导致另一种(例如吸烟导致肺癌),或者它可以与另一个(例如吸烟与高醇消耗相关)。如果一个动作导致另一个动作,那么它们肯定会相关。但只是因为两件事发生在一起并不意味着一个引起另一个,即使它似乎有意义。
  • 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.
    写作:为避免注射部位的局部感染,请遵循这些规则:使用新的无菌注射器和无菌针来吸取药物,同时防止注射材料与非无菌环境之间的接触。在处理药物之前,应保持适当的手动卫生。
    不要写:遵循无菌技术治疗胰岛素注射。
  • 使用您的受众熟悉的类比。
    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.

Conclusion

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.


References

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。腕管手术的患者理解:健康素养调查。手(n y)。2017年3月12日(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 -医学研究协会的慈善机构,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)从研究到临床实践:考虑研究人们手中的研究。对他人可能有用的个人反思。小儿康复,卷。8,不。3,pp。165-171。

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