e-Rheumatology – tomorrow’s care
In today’s digital times, many of us own a smartphone. This has facilitated the incorporation of mobile apps into medical care, which is a goal of governments and authorities all over the world.
But it can be tricky to orient oneself in the sea of health apps available today. That is why it’s important to ensure not only quality and security, but also the medical effect of apps intended for people with chronic diseases.
The importance of self-management when having a chronic disease
During the COVID-19 pandemic, the number of visits to rheumatology clinics declined worldwide for obvious reasons, but even before the pandemic broke out, visits were relatively low. Even though the majority of healthcare spending is on people with chronic diseases, these people spend very little time in contact with healthcare professionals (1). That means that if you have a chronic disease, you need to be able to manage it on your own for much of the time.
Self-management involves different strategies in daily life for living with a chronic disease. This could mean routines for taking medication, ways to avoid triggering flare-ups, or identifying behaviors and factors that reduce pain and chronic fatigue. Studies show that effective self-management can have a positive effect on symptoms. It also leads to better contact with healthcare and it can slow the progression of disease (2).
Regularly documenting symptoms, general health and physical activity can provide you with a better overview and control of your disease. Nor should the importance of knowledge be underestimated when it comes to self-management. For example, research shows a relationship between a good understanding of RA and being able to perform usual activities of everyday life, and vice versa (3).
Are we ready for e-rheumatology?
Today the conditions are better than ever before for successful self-management, given the digital revolution with the rapid development of health apps.
A scientific article was published seven years ago entitled “e-Rheumatology: are we ready?” (4). Four years later, the European Alliance of Associations for Rheumatology (EULAR) released guidelines for the development and use of apps intended for rheumatic diseases (5).
Today there are apps like Elsa, which are classified as medical devices.
Medical associations, such as the American Medical Association, encourage integration of e-health into medical care (6); government agencies recommend it (7); and in Germany, doctors can prescribe apps to patients (8).
As you already know, you can log your symptoms in Elsa, similar to the self-rating of symptoms you may already do with your rheumatologist. Patient-reported symptoms play an important role for improved quality of care (9), and a major advantage with an app is that symptoms can be documented more regularly, which provides a better overview and a detailed picture of the disease over time, between doctor visits.
Sharing data with medical care
Today, you might see your doctor once every six months, so it can be difficult to remember how you’ve been doing since your last visit. There’s also something called recall bias, which means you might misremember things. How you feel now tends to influence your memory of how you felt in the past (10).
But if you can share your logged symptoms with your medical care provider, then your doctor visit can be based on actual data that shows exactly how you’ve felt since your last consultation, how many flare-ups you’ve had, which symptoms were worst, what medications you have taken or not taken, and so forth.
With an integrated system, healthcare could also see patients’ current state between clinical visits, and identify people who are not doing very well.
What does the research show?
In a study from the UK, the use of a rheumatoid arthritis app similar to Elsa was evaluated in a group of RA patients and their doctors for three months (11). The study highlights three important areas:
1) The app was able to show the fleeting nature of the disease, with symptoms that come and go.
Otherwise, this is something that often results in underreporting of symptoms and may lead to patients feeling misunderstood.
2) The app clearly illustrated the effect of medication over time, because longer trends were picked up. It also showed flare-ups that patients had forgotten.
3) When doctor consultations were based on the patient’s documented symptoms, the patient was more active in the discussion and felt they were taken seriously, which we know leads to better management of the disease and improved quality of life.
Some peer-reviewed studies of rheuma apps have been published in recent years (summarized for example in 1, 2 and 12). Taken together, they show that it is entirely possible for patients with rheumatic diseases to regularly document their symptoms in an app for a longer period of time, that it is possible to share the information with healthcare, and that the apps are appreciated by doctors and patients alike.
All that remains now are bigger studies comparing this kind of app to how medical care functions today, and showing the clinical effect. In that context, Elsa Science hopes to be able to play a part.
We look forward to returning to the subject. Until then, the research says: keep on logging your symptoms.
1. Gandrup et al. Remote symptom monitoring integrated into electronic health records: A systematic review. J Am Med Inform Assoc. 2020 Nov; 27(11): 1752-1763.
2. Mollard and Michaud. Self-Management of Rheumatoid Arthritis: Mobile Applications. Curr Rheumatol Rep. 2020 Nov 26;23(1):2.
3. Caplan et al. Strong association of health literacy with functional status among rheumatoid arthritis patients: a cross-sectional study. Arthritis Care Res. 2014;66(4):508–14.
4. El Miedany. e-Rheumatology: are we ready? Clin Rheumatol. 2015;34:831–837.
5. Najm et al. EULAR points to consider for the development, evaluation and implementation of mobile health applications aiding self-management in people living with rheumatic and musculoskeletal diseases. RMD Open. 2019;5(2):e001014.
6. American Medical Association. Guidelines for Mobile Medical Applications and Devices. D-480.972. 2019. https://policysearch.ama-assn.org/policyfinder/detail/mobile%20Health%20Care?uri=%2FAMADoc%2Fdirectives.xml-0-1674.xml
7. E-hälsomyndigheten. Tematisk årsrapport om att använda och tillgängliggöra hälsodata med fokus på hälso- och sjukvården Dnr: 2021/03351. 2021. (SWE) https://www.ehalsomyndigheten.se/globalassets/dokument/rapporter/arsrapport-2021-halsodata.pdf
8. Richster et al. Mobile App-based documentation of patient-reported outcomes - 3-months results from a proof-of-concept study on modern rheumatology patient management. Arthritis Research & Therapy. 2021 Apr 19;23(1):121.
9. USA FDA. Guidance for industry patient-reported outcome measures: use in medical product development to support labeling claims. December 2009. https://www.fda.gov/downloads/drugs/guidances/ucm193282.pdf.
10. Bradburn et al. Answering autobiographical questions: the impact of memory and inference on surveys. Science 1987;236:157-61.
11. Austin et al. Providing 'the bigger picture': benefits and feasibility of integrating remote monitoring from smartphones into the electronic health record. Rheumatology (Oxford). 2020 Feb 1;59(2):367-378.
12. Luo et al. Mobile Apps for individuals with rheumatoid arthritis: A systematic review. J Clin Rheumatol. 2019 Vol.25(3), p.133-141.