“A 45-year-old male presented with bloody diarrhea of 15 days’ duration. On evaluation, sigmoidoscopy revealed multiple ulcers and mucosal bleeding along with multiple pseudopolyps. On probing, he revealed history of a similar illness five years back, for which he was advised medications. He had stopped the same one month back due to side effects. The patient had no documents of his previous treatment. The hospital where he was previously treated had paper records, which were then messaged over phone suggesting thiopurine-related cytopenia in the past.”

The incidence of inflammatory bowel disease (IBD) is increasing in the Asia-Pacific region, including India [1, 2]. In many Asian countries, including India, the practice of record-kee** is left to the discretion of the institutes and physicians. The onus of safekee** of records commonly lies on the patient. Though the adoption of electronic medical records (EMR) is increasing in many develo** countries, the lack of standardization and insufficient infrastructure continue to pose. In India, the government has organized a universal Health ID system through ABHA or Ayushman Bharat Health Account; the uptake has been limited as of now [3]. Challenges include nascent infrastructure, access to the internet and mobile phones and illiteracy, among others [4].

This lack of transportability of health-related personal information may lead to poor inter-operability of record-kee** systems and loss of information during communication between treating physicians. Treatment of IBD with regular follow-up generates numerous medical documents. Parsing through these documents for relevant information is a daunting and time-consuming task. When patients do not bring all of their documents or when the documents are not organized and curated, critical information is missed. As exemplified by the vignette above, in the absence of a review of previous records, a piece of vital information regarding thiopurine-related cytopenia would have been missed, leading to potential adverse outcomes. Furthermore, a loss or unavailability of records may increase the number of visits, lead to unnecessary procedures and delay in timely initiation of appropriate therapy. Investigations, sometimes expensive, including mutation studies, tend to get unnecessarily repeated. This may also cause a repetition of previously failed treatment. Multiple drugs are available for IBD care and a snapshot of the treatment is needed in a busy OPD for clarity in approach to treatment. Information on immunizations, colorectal cancer (CRC) screening and bone health is all important for the care of an IBD patient [5, 6].

Comprehensive standardized medical records have been used successfully in India to treat human immunodeficiency virus (HIV) infection and tuberculosis and in antenatal care. These documents serve as a repository of relevant information about the diagnosis, treatment and follow-up, placing health in the hands of the patient. IBD is a chronic disease requiring long-term management. The choice of treatment depends on response and tolerance to previous therapy. Multiple guidelines advise for long-term surveillance for colonic cancer. IBD care enjoys a wealth of established guidelines, objective classifications, standard treatment protocols and prognostication models that make it an ideal candidate for a similar comprehensive medical record. The key task is to get the guidelines and wealth of available information into real-time practice.

To serve this end at our institute, in collaboration with Colitis and Crohn’s Foundation (India), a comprehensive document—The “IBD Card”—has been designed (Fig. 1 and Appendix). The document is designed to be carried by the patient (and a copy with the treating team) and may be used by treating physicians across institutes, providing a continuity of care even with a change in care providers. This will also help frequent travelers and medical tourists. The document includes details on and classification of the diagnosis, past treatment, response to treatment, activity, side effects and endoscopic findings. Relevant investigations can be entered. An annual report has been devised to capture yearly snapshots of assessments related to disease activity and follow-up. This annual report makes the document a living document rather than a periodic IBD passport. A section is dedicated specifically to plan and record colonoscopic surveillance and preventive aspects, including vaccination. Various classifications have been included for a ready reference of the treating physician. Health and dietary advice for patients was included at the end. Care was taken to include only the relevant information to keep the document concise and easy to use in a busy outpatient department.

Fig. 1
figure 1

IBD Card- Provision for a continued care

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We present this card for our readers and clinicians in India and abroad to aid high-quality IBD care to patients and provide new insights to the physicians as well. This is an important bridging step even while the development of infrastructure and policies for EMR continues. It is hoped that the new dawn of the digital health revolution in India will improve the continuity of care for our IBD patients. Even so, this document will continue to capture the essence of IBD care and provide a window to the behavior of the disease and therapeutic responses in the patient.