AS HEALTH professionals make diagnoses every day, patients around the world take to their keyboards to research their newfound conditions. But how often is the information that these patients need accessible to them? Most journals only publish articles written for specialist readers. However, with publications now becoming increasingly accessible, patients are reading medical publications in the hope that they can better understand how to manage their conditions and/or the treatments that could be available to them.
This is where the scientific and medical publisher Future Science Group has stepped in. The progressive publisher has recognised the unmet need for patient-oriented resources and, over the past couple of years, has started publishing plain language summaries (PLS) of technical publications in its peer-reviewed journals.
What Are Plain Language Summaries?
PLS are concise recaps of technical publications. Written for lay audiences, they unpack the complex data, jargon, and concepts covered in these publications, breaking these down into their simplest terms. The summaries blend plain language with a range of media inclusions, like infographics, videos, and audio so that non-specialist readers can understand the latest developments in specific conditions, treatments, and therapies.
Here, Future Science Group reflects on two recent studies that assess a) to what extent patients read medical publications and b) how patients use the information in these publications to manage their conditions.
Do Patients Read and Use Peer-Reviewed Medical Publications?
One example of a study into how patients research their conditions is a study conducted by the healthcare marketing research company Adelphi Research. During this study, the research team asked 100 patients who have atopic dermatitis (eczema) and 50 patient caregivers to complete a survey on the information sources they use to research the condition.
The study, which took place in the U.S., noted that 35% of its respondents had a college education and 33% had a graduate school education. 81% of these respondents had carried out online research to investigate their condition, 77% had accessed information from healthcare providers, and 67% had sourced medical research articles themselves. Of those familiar with medical publications, 37% actively searched for these publications, while 90% accessed freely available articles.
· 62% of the respondents accessed medical publications via a general internet search.
· 49% accessed scientific journals.
· 19% sourced information from a library.
· 13% found information on patient organisation websites.
· 12% found information using the free search engine PubMed.
However, only 53% of respondents felt at least relatively confident in their understanding of the medical publications. Approximately half of the respondents didn’t feel the publications empowered them to get involved in decision-making processes related to their eczema or stay up to date with the latest developments surrounding their condition.
Fewer than half of the respondents felt the publications empowered them to:
· Optimise their disease management.
· Discuss alternative treatments with healthcare professionals.
· Control their condition.
· Adhere to their treatment plans.
The results of this study emphasise the clear need for peer-reviewed medical content written for patient audiences. Most scientific journals lack clarity for lay audiences, and they’re often difficult to understand. However, Plain language summaries offer a valuable solution through simple language, clear structure, and media inclusions that make difficult concepts easier to grasp for patients who want to learn more about their conditions.
What Is the Value and Feasibility of Developing Plain Language Summaries of Peer-Reviewed Articles for Patients?
Another study, this one published in Therapeutic Innovation & Regulatory Science, also involved a survey that investigated whether and how patients research their conditions. Like the Adelphi Research study, this research involved a survey that confirmed patients regularly research health-related information online: 61% of the study respondents performed general internet searches on their conditions, 57% accessed patient-specific websites, and 47% searched for articles from scientific journals.
55 patients provided complete responses to the survey, reporting on a variety of diseases. While 23% reported on diseases concerning the central nervous system and neurology, 22% reported on pain and inflammation, 17.5% reported on autoimmune diseases, and 17.5% reported on cancers. Most of these patients consulted physicians for information about their conditions: 62% consulted specialists, 30% consulted general practitioners, and 5% consulted nurses. That said, only 17.5% of patients relied solely on a healthcare professional for information. Most also performed general internet searches, visited patient organisation websites, and accessed print and electronic scientific journals.
Almost all patients who took part in the study agreed that they wanted their physicians to discuss new information about their conditions and possible treatments with them. While 69% reported that they wanted their doctor to share all information with them, 29% reported that they only wanted their doctor to share information that was specifically relevant to them. The remaining 2% felt that information share would be of interest but that they would find it acceptable for their doctor not to share information.
Furthermore, while 96% of the patients concluded that they would be interested in sharing health information that they had found with their doctor, 45% noted that they would only feel comfortable discussing such information if they had a solid enough understanding of the material to have a conversation about it.
To conclude, 98% of patients either agreed or strongly agreed that health-related information should be easily understandable and more accessible to patients.
Patient and Caregiver Interviews
The study also involved interviews with patients and caregivers, during which patients explained that the main reasons they were researching their conditions were to improve their knowledge of their conditions and empower themselves. All interviewees noted that they would like doctors to provide more information, especially as information from the internet isn’t always reliable.
Some of the information that patients hoped to gain from their doctors included information on how their disease and its management can affect daily living, epidemiologic data that offers long-term prognostic information about their disease, and information on the relevance of data from clinical studies. The respondents also agreed that handing out PLS could help doctors build good relationships with their patients while offering reliable and trustworthy resources.
Meanwhile, the physicians who took part in the study concluded that PLS play an important role in improving patient communication, especially given the limited time available during many consultations. As a result, 60% of physician respondents confirmed that they would use PLS in their patient communications.
Open-access publishing and the expansion of online platforms should make communication through PLS even easier over upcoming years. This is essential given new patient engagement concepts (like shared decision making (SDM), self-management, patient empowerment, and patient-centred care), which have been widely adopted in clinical practice over the past few years. These concepts are key to helping patients become more involved in their healthcare management.
How Plain Language Summaries Fill the Demand for Patient-Centred Resources
The advent of PLS and other patient-centred resources has fuelled the evolution of the historically paternalistic relationship between patients and healthcare professionals into a collaborative partnership. The studies discussed here reinforce the evidence that patients actively seek information about their conditions to complement the information they receive from healthcare professionals, and that there is demand for plain language content written for patient audiences.
Future Science Group’s publication of PLS in its open-access journals works towards filling this demand, which is only growing. These summaries prove invaluable to both patients and healthcare professionals, playing an essential role in patient dialogue, education, and accessibility.
Future Science Group’s highly regarded journals publish the latest information in a wealth of scientific and medical disciplines, spanning from oncology to regenerative medicine to nanomedicine. Aside from publishing its portfolio of 34 journals, the Group also hosts a variety of events and digital hubs, where scientific communities come together to partake in essential discussions that support developments in science and medicine.
Future Science Group has been praised for its PLS initiative, which makes clinical study results and other essential information accessible to lay audiences, ensuring that all readers can access resources that help them understand diseases, treatments, and therapies.
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