Digital care and inflammatory bowel diseases
Sophie Restellini, EpiCom Member
Digital health is a broad concept encompassing categories such as mobile health (mHealth), health information technology (HIT), wearable devices, telehealth and telemedicine, with several aims, one of which is to foster the development of personalised medicine [1, 2].
Digital care meets the same requirements as in-person medicine (regarding ethics, patient consent, authentication of health professionals, report of consultation in the patient's file). Pre-COVID-19 this model of care was successfully used to monitor patients with a variety of chronic illnesses, and it gained traction after the emergence of COVID-19 because of the emerging need to apply alternative ways of delivering healthcare without human contact.
Numerous compelling studies have been conducted on the role of digital systems in the care of patients with Inflammatory Bowel Diseases (IBD), examining the feasibility, patient acceptance, efficacy, improvement in patient knowledge, quality of life and adherence and impact on healthcare utilisation. Despite the convincing results of these studies, in-person visits remained the primary model of care until the COVID-19 pandemic, mainly due to caregiver and patient habits, organisational or cost barriers, such as increased “non-billable” encounters (phone calls and electronic messages), and the impossibility of performing diagnostic investigations required for IBD management, such as physical examinations and endoscopic and radiographic assessments. With the emergence of COVID-19 and mandatory social distancing, the delivery of care had to adapt to this new reality and rapid adoption of telemedicine was observed worldwide. International gastroenterology societies recommended that elective office visits be conducted remotely to decrease density in the office and to provide care especially to more vulnerable patients and those less able to travel [3–5]. Governments around the world temporarily waived certain restrictions on digital health to facilitate its adoption .
Despite several constraints, digital care still offers various interesting benefits. With respect to IBD, recent guidelines recommend strict long-term monitoring of mucosal inflammation and timely optimisation of treatment during a disease flare . Multiple digital tools have been developed for the remote monitoring of symptoms and the collection of real-time data provided by patients has enabled healthcare providers to intervene before disease progression. Another benefit of digital health is the ability to help educate patients about complex diseases and engage them in their care. Online and mobile applications have been developed to allow patients to become more knowledgeable about their illness and collaborate with their care team between visits. These applications also enable them to learn about medications and issues (such as side effects), which can promote adherence to treatment best practice.
Several communication platforms for digital care have been developed around the world. The Danish and Irish were pioneers of the development of telemedicine . The Dutch created a telemonitoring tool called MyIBDCoach, a patient-focused application for smartphones and tablets, currently used by 10% of the 90,000 IBD patients in the Netherlands. This tool monitors disease activity, therapy compliance, side effects of medicines, nutritional status, smoking behaviour, participation in (paid) labour, quality of life, anxiety symptoms, signs of depression and major life events. Users are periodically asked to complete online questionnaires. Answers to these questionnaires appear in a dashboard, creating insights for not only the patient but also the IBD multidisciplinary team. Nurses or doctors can receive an alarm signal indicating the need to contact the patient directly to discuss further treatment. A randomised controlled trial demonstrated that the use of this application leads to significantly fewer visits to the gastroenterologist in the outpatient clinic and fewer hospital admissions and significantly increases treatment adherence and general patient satisfaction . Another interesting example of a digital care platform is the Canadian PACE (Promoting Access and Care Through Centers of Excellence) program, implemented to facilitate communication in more remote areas and for less mobile patients. Patients have access to a remote panel of experts (gastroenterologists, surgeons, dietician) and nurses who coordinate care, organise exams and monitor results obtained with a calprotectin kit, which is used by the patient at home, with online submission of results. After four years of implementation, and 522 telemedicine consultations, the group observed a reduction in waiting time from 126 to 8 days to see a specialist for IBD . The programme was particularly interesting for the follow-up of less mobile patients living in remote areas and pregnant women; costs were also reduced and approximately 339,493 km of travel were saved.
Which is the right way to deliver IBD digital care?
Multiple means of communication can be adopted – each has its advantages and disadvantages.
Digital consultations can be conducted by video or telephone. Video consultations allow providers not only to speak with patients but also to visually assess them. A successful video consultation is contingent on both the patient and the provider having access to appropriate technology, a strong internet or data connection and a quiet, non-distracting environment in which to conduct the visit. The connection can be accomplished via several telecommunication platforms, which are or are not integrated into the patient’s electronic medical records. Regardless of the platform used, the platform’s security is key to the prevention of security breaches. Patient consent to use telemedicine platforms should be obtained before the start of the consultation and clearly documented in the medical records. However, not every patient is able to participate in a video consultation due to a lack of access to technology, technological illiteracy or technical problems on the day of the visit.
A telephone consultation is also a good option. Telephone consultations do not require additional technology or training on the part of the provider or patient. For a successful telephone consultation, both the provider and the patient must have an adequate telephone connection and a quiet space in which to conduct the conversation; visual distractions are less of a concern.
As technology access still varies across countries, the choice of the mode of communication also depends on local availability. A survey of general practitioners in Lombardy, Italy, reported that 73% of patient encounters were provided by telephone, compared to 24% by video, during the COVID-19 pandemic . By contrast, in the United States, many practices aim to perform most remote visits via video, which are better reimbursed than a telephone consultation .
Recently, a group of experts supported by ECCO and IOIBD provided insights into past and current practices among IBD specialists and shared global strategies to incorporate digital health in IBD. The group performed a survey among 44 participants to assess pandemic-related changes in clinical practice among IBD practitioners attending a virtual IOIBD meeting in April 2020 . This survey demonstrated major changes in practice since the onset of the pandemic, with a dramatic shift towards the use of telemedicine (25% used digital health tools before the onset of the COVID-19 pandemic whereas more than 75% have used it since the start of the pandemic). Among the participants, at least 50% of patient visits were conducted using telephone consultations and 50% using video consultations.
What is the future of digital health?
With multiple technology options and fewer restrictions on telemedicine, digital health is becoming an integral part of clinical practice now and this trend is likely to continue into the future. Interestingly, 27% of the IOIBD survey participants planned to continue to use telemedicine even when they could see patients in-person again. Moreover, a Twitter poll conducted in April 2020 reported that 41% of 274 respondents stated that they plan to do more telemedicine than before the COVID-19 pandemic. Similarly, in an international survey with 802 respondents from 56 countries, respondents reported that telemedicine would remain a significant part of their medical care for IBD patients after the pandemic, estimating that 25%–50% of clinical encounters will be conducted via digital tools after the return to normality .
Innovation is already underway to develop new tools that can enrich the use of digital care.
Many programs in gastroenterology and IBD already include an electronic survey of symptoms and telemonitoring systems [14, 15]. The focus is now on imagining new digital tools to help maintain tight control of patients, e.g., by integrating biomarkers with point-of-care and home testing. These techniques could provide valuable information to care providers in the future regarding IBD disease activity, especially if access to a laboratory or capacity to perform endoscopic staging procedures is limited. Recent literature suggests that this measure could be an accessible management strategy for objective assessment of disease activity . The technologies described so far still require human interaction and time, and billing options to compensate for health professionals’ time for each digital encounter remain a challenge that may vary from country to country. Herein lies the promise of artificial intelligence to take over simple tasks to support patient care.
It seems likely that digital care is here to stay and will continue to develop. At a time when the incidence of IBD is increasing and the pressure to reduce costs is greater than ever, digital care could be a valuable tool to reorganise care and offer personalised medicine to everyone. Many caregivers are still reluctant to use these new digital tools and the health care system will also need to become aware of the new types of work created by these systems. All partners, including nurses, must seek to embrace these portals to ensure the sustained use of digital tools long after the current pandemic subsides. Of course, digital care cannot replace all services but it can be seen as an aide or complement to traditional monitoring and long-term care in regard to day-to-day management, consultations and communication, especially for patients at high risk for non-adherence and for those with limited access to IBD centers of excellence. Further technological innovations will enable practitioners to embed digital health’s role in clinical care in the future. Harnessing the power of machine learning offers future opportunities to release healthcare professionals from simple tasks to spend more time on complex patient decisions not amenable to computer-based decisions.
- What is digital health ? https://www.fda.gov/medical-devices/digital-health-center-excellence/what-digital-health
- eHealth : Digital health and care, https://ec.europa.eu/health/ehealth/home_en
- ECCO Information on COVID-19. European Crohn’s and Colitis Organisation website 2020. https://ecco-ibd.eu/publications/covid-19. html. Accessed April 2020.
- Bezerra JA, El-Seraq E-S, Pochapin MB, Vargo JJ. COVID-19 Clinical Insights for Our Community of Gastroenterologists and Gastroenterology Care Providers. Joint GI Society Message on COVID-19. 2020.
- Kennedy NA, Jones GR, Lamb CA, et al. British Society of Gastroenterology guidance for management of inflammatory bowel disease during the COVID-19 pandemic. Gut. 2020;69(6):984–90.
- Sun S, Yu K, Xie Z, Pan X. China empowers Internet hospital to fight against COVID-19. J Infect. 2020;81(1):e67–8.
- Colombel JF, Narula N, Peyrin-Biroulet L. Management strategies to improve outcomes of patients with inflammatory bowel diseases. Gastroenterology. 2017;152(2):351–61.
- Elkjaer M, Shuhaibar M, Burisch J, et al. E-health empowers patients with ulcerative colitis: a randomised controlled trial of the web-guided 'Constant-care' approach. Gut. 2010;59(12):1652–61.
- de Jong MJ, van der Meulen-de Jong AE, Romberg-Camps MJ, et al. Telemedicine for management of inflammatory bowel disease (myIBDcoach): a pragmatic, multicentre, randomised controlled trial. Lancet. 2017;390(10098):959–68.
- Habashi P, Bouchard S, Nguyen GC. Transforming Access to Specialist Care for Inflammatory Bowel Disease: The PACE Telemedicine Program. J Can Assoc Gastroenterol. 2019;2(4):186-194.
- Fiorino G, Colombo M, Natale C, Azzolini E, Lagioia M, Danese S. Clinician education and adoption of preventive measures for COVID-19: A survey of a convenience sample of general practitioners in Lombardy, Italy. Ann Intern Med. 2020;173(5):405–7.
- Lewin S, Lees C, Regueiro M, Hart A, Mahadevan U. International Organization for the Study of Inflammatory Bowel Disease: Global strategies for telemedicine and inflammatory bowel diseases. J Crohns Colitis. 2020;14(Suppl 3):S780–4.
- Lees CW, Regueiro M, Mahadevan U. International Organization for the Study of Inflammatory Bowel D. Innovation in inflammatory bowel disease care during the COVID-19 pandemic: Results of a global telemedicine survey by the International Organization for the Study of Inflammatory Bowel Disease. Gastroenterology. 2020;159(3):805–8.
- Cross RK, Langenberg P, Regueiro M, et al. A Randomized Controlled Trial of TELEmedicine for Patients with Inflammatory Bowel Disease (TELE-IBD). Am J Gastroenterol. 2019;114(3):472–82.
- Bossuyt P, Pouillon L, Bonnaud G, Danese S, Peyrin-Biroulet L. E-health in inflammatory bowel diseases: More challenges than opportunities? Dig Liver Dis. 2017;49(12):1320–6.
- Haisma SM, Galaurchi A, Almahwzi S, Adekanmi Balogun JA, Muller Kobold AC, van Rheenen PF. Head-to-head comparison of three stool calprotectin tests for home use. PLoS One. 2019;14(4):e0214751.