Advances in technology have shaped the way we communicate and have enabled the modern-day patient to easily connect with medical experts, patient advocates and others living with their disease. Through computers, handheld devices like tablets and smart phones, and social media, patients are also able to instantly access credible information – something that could not have been imagined until recently. Digital tools and online resources have become especially beneficial for people living with rare health conditions, such as sarcomas or malignant tumors that are often difficult to diagnose.
Sarcoma Awareness Month was recently commemorated in the United States and is an opportune time to raise awareness among those people unfamiliar with sarcomas, while also empowering patients living with the disease to be their own best advocates. One way patients can self-advocate is by using available digital resources to obtain information about their condition.
For example, for patients with gastrointestinal stromal tumors (GIST), a rare, life-threatening sarcoma that is primarily found in the gastrointestinal (GI) track and most often found in the stomach or small intestine, the journey to a correct diagnosis may take years as symptoms are not present in earlier stages of the disease. Once diagnosed, the journey has just begun, and patients should understand how to best manage their disease. Patients with GIST can use online resources to take charge of their health by following these steps:
* Form a healthcare team: Form a multidisciplinary team of healthcare professionals (e.g., gastroenterologist, medical oncologist, surgeon, pathologist) to ensure that patients and doctors are working together to help achieve the best outcome.
* Continue the conversation: Keep the lines of communication open with a doctor. Don’t hesitate to ask questions or reach out to healthcare professionals between regular visits.
* Connect with others: Join online or live support groups to connect with other patients and exchange personal experiences. A recent study from Japan showed that in today’s era, social media, including Twitter, are valuable resources for the sharing of psychological support among the cancer community.
To further assist patients with GIST with managing their condition, Novartis recently launched two new digital resources:
* The GIST Network YouTube Channel: Featuring videos to support GIST patients and their caregivers with patient stories and tips from medical experts.
* “Assess the Risk” Mobile App: Geared to educate healthcare professionals on how to assess the risk of recurrence of GIST and facilitate the discussion between healthcare professionals and patients.
“With the availability of new digital tools, such as the ‘Assess the Risk’ mobile app, new lines of communication are being formed between patients and doctors, which is truly remarkable,” says Dr. Robert Andtbacka of the Huntsman Cancer Institute. “Working with a team of physicians and connecting with other patients are both integral parts of the patient journey.”
As technology continues to evolve, it is important that patients living with a rare condition such as GIST continue be their own health advocates and work with their healthcare professionals to determine a disease management plan that is best for them.
For more information about GIST and to hear other patient stories, please visit the GIST Network Channel on the Novartis YouTube Channel: www.youtube.com/GISTNetwork. Healthcare professionals can download the Assess the Risk” app on a mobile device, by texting APP to 59629 or searching GIST Cancer Risk Novartis in the App Store or Google Play.
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