Empowering Patients through Health Literacy
By Amy Bruno-Lindner, SPAGN Volunteer and Editor-in-Chief of the Voices of Sarcoma blog
Getting a sarcoma diagnosis is a life-altering event that brings a wave of emotions and questions. Once the initial shock subsides, many patients turn to the internet in search of information about their disease.
Despite the common advice of "Whatever you do, don't google it!", seeking information about your disease and its treatment can be empowering. Instead of discouraging patients from seeking information, it's important to guide them towards reliable sources of information and support them in becoming health literate.
The power of health literacy
Health literacy can be defined as ”the ability to find, understand, and use information and services to inform health-related decisions and actions“.
Health literate patients can better navigate the vast sea of health information and discern what is trustworthy and relevant to their specific situation. It goes beyond simply seeking out knowledge, as it involves critically evaluating and applying it in practical ways. This might mean a patient interpreting their own blood test results by looking up what the values mean, reading a CT scan report after familiarizing themselves with a few medical terms, finding relevant information in the instruction leaflet of a newly prescribed medication, or searching a clinical trials database to find a trial they can ask their oncologist about.
Ultimately, health literacy leads to increased self-confidence and a sense of empowerment in managing one's health.
The main source of information
Without a doubt, a patient’s main and most trusted source of information should be their oncologist or healthcare provider. This is the person who knows the patient’s medical history, the side effects of treatment they are experiencing, their personal wishes regarding treatment, and so much more.
Effective communication between doctor and patient is key. Health literacy enables patients to communicate better and to become an active participant in their own care: they feel confident to ask important questions, request clarification if needed, advocate for themselves, seek second opinions when necessary, and weigh risks and benefits of a treatment in order to make informed decisions.
Identify reliable sources of information on the internet
When it comes to information about sarcoma, a variety of sources are available. However, determining which sources are reliable can be a daunting task.
A study of cancer patients found that the top five sources of information consulted included the internet, their healthcare provider, brochures or pamphlets, cancer organizations, and another person with cancer, in that order. The internet offers a seemingly endless supply of webpages, articles, podcasts, videos, webinars, forums, and blogs dealing with sarcoma. But how can a patient be sure an internet source is reliable?
As a rule of thumb, it is best to rely on reputable and trustworthy internet sources such as the following:
- Government agencies, such as The National Cancer Institute
- Medical institutions/hospitals, such as the MD Anderson Cancer Center or The Royal Marsden
- Sarcoma patient advocacy organizations, such as SPAGN, Sarcoma UK, or organizations dedicated to specific types of sarcoma, such as The Life Raft Group (for GIST)
- Independent collections of data (which provide summaries of the best evidence from research to help people make informed choices about treatment), such as The Cochrane Library
- Peer-reviewed journals, such as The Annals of Oncology or The Lancet Oncology.
(Naturally, patients will want to consult resources of this kind in their own language and from their own country whenever possible.)
5 questions to ask
But what about other sources of information on the internet that don’t fall under the categories above? How can a patient evaluate how reliable they are?
Here, the skills of health literacy can be applied. Patients should approach information critically, by asking some fundamental questions:
- Is the information on the website up to date? Since the research on sarcomas and their treatment is continually evolving, it is crucial to determine whether the information on websites is current. Be sure to check the copyright date on the website.
- What is the underlying worldview behind the information? Consider the perspective of the source providing the information. Some websites or individuals may promote alternative or unproven treatments that contradict established scientific evidence. Be cautious if the information suggests a mistrust of evidence-based medicine (e.g., “This is the cure Big Pharma doesn’t want you to know about”) or dismisses well-established treatments without substantial scientific backing.
- Where does the information come from? Is the information solely based on individual experience? Be cautious of sources that rely solely on individual experience, especially if they claim miraculous results or cures. Anecdotal evidence may not provide a reliable representation of the overall effectiveness of a treatment or intervention. It's essential to look for information based on broader evidence and scientific studies that involve larger sample sizes and rigorous methodology.
- Is there a commercial agenda involved? Be vigilant when encountering information that seems driven by a commercial agenda. Some sources may be attempting to sell specific products or treatments, which can bias their perspective. Consider whether the information provided is impartial or influenced by financial motives. One way to recognize such sources is to look for “overpromising language”, like “miracle cure” or “100% natural”. Reliable sources of information provide evidence-based recommendations rather than promoting products or services.
- Is the information practically relevant to your specific situation right now? Assess the practical relevance of information to your specific situation. Promising findings reported in laboratory or early-stage studies are often featured in the news and presented with great excitement, but these findings may not be immediately applicable to your treatment options. It takes time for research to progress through various stages and ultimately translate into approved therapies. Consult with your healthcare team to understand the current standard of care and discuss any emerging treatments that might be suitable for you.
Other sources of information and emotional support
There are other, extremely helpful sources of information for sarcoma patients, both on the internet and in “real life”. These sources can provide practical and emotional support in addition to information. Engaging in online or in person discussions with patient advocates, support group members, and fellow patients can offer valuable insights, emotional encouragement, and practical coping tips. These discussions can also engender a sense of belonging to a community.
Local or international patient advocacy organizations specializing in sarcoma provide information about sarcoma on their websites, in brochures, at conferences, on telephone hotlines, or in WhatsApp groups, to name a few. These organizations offer reliable and up-to-date resources, patient-friendly educational materials, podcasts, and webinars as well as a supportive community of individuals who understand the challenges of living with sarcoma.
Finally, reading about other sarcoma patients' experiences on patient forums or dedicated Facebook groups can also be highly informative. These platforms provide a supportive community where patients can share their own experiences and learn from others who have faced similar challenges. People who do not generally use social media might be very pleasantly surprised by the wealth of useful information available: Patients share tips for dealing with treatment side effects, post their treatment successes, describe their emotional coping strategies. When moderated by expert patients or professionals, these forums ensure reliable information and a safe space for individuals to seek advice, gain insight, and feel less alone in their journey.
Developing health literacy skills to access trustworthy information
Rather than discouraging patients from seeking information, the focus should be on guiding them towards reliable sources and supporting them in becoming health literate. By critically evaluating information sources and connecting with other members of the sarcoma community, patients can empower themselves to take an active role in their own care.
Photo credit: George Milton