Sumit Parikh is the ABDR Senior Research Fellow at the Australian Haemophilia Centre Directors’ Organisation (AHCDO)
Attending World Federation of Haemophilia (WFH) 2016 was a very rewarding experience: it provided me with an innovative and comprehensive overview of the latest developments, current patient healthcare issues and the challenges ahead in the management and treatment of patients worldwide. Presentations, workshops, symposia and exhibits featured cutting-edge trends in research and treatment for haemophilia and other inherited bleeding disorders in addition to networking opportunities and patient experiences. Amongst many sessions covering a wide range of topics, I was particularly intrigued by multidisciplinary sessions which provided new insights and valuable information on issues relating the use and management of health data, which is a key area of my work.
Privacy Protection, assessment of online information and using web-based tools in bleeding disorders care
Chair: David Silva Gómez, Spain
The Virtual Clinic Experience – Benefits and Challenges presented by electronic engagement between PWBD and Treatment Centres…the view from both sides
– Deborah Gue, Canada
Deborah Gue, Clinical Nurse Specialist and Nurse Co-ordinator for the British Columbia Adult Bleeding Disorders Program, highlighted the benefits and challenges presented by electronic engagement between patients with a bleeding disorder and Haemophilia Treatment Centres (HTCs). Despite technological advances there are many avenues like prevalence, cost, time, privacy, intrusiveness, user experience, data quality and impact on goals to explore in order to identify the most effective mode of engagement (e.g. letters, email, smartphones, social media, videoconferencing and blogs). There is no doubt that web-based tools and smartphone apps have been widely accepted in bleeding disorders care and are proving to be very effective. HTCs are responsible for exploring options with patients, seeking their preferences, documenting, re-evaluating and adjusting accordingly. However, patients must consent to electronic communications if they deem it appropriate and need to engage proactively to provide relevant feedback. Technology does offer opportunities to improve patient care; however, these opportunities also bring risk and to protect patient privacy limitations are put upon health-care providers. In conclusion, for the best outcome it is essential that the ground rules for electronic communication should be agreed to between the HTCs and their patients through a signed agreement and that patients must make informed decisions about using electronic communications with their HTCs.
Chair: Andrew Brewer
Where to begin
– Adriana Linara, Colombia
Dr Adriana Linares, Associate Professor of Pediatrics at the National University of Colombia, South America, discussed some very important objectives of data collection including the purpose and benefits of data. With prophylaxis as an example, data can provide answers to key questions like when and how to initiate prophylaxis, which is the most appropriate dosing regimen for prophylaxis, how personalised treatment regimens be developed, how can adherence to treatment be optimised and how treatment of patients with inhibitors be managed.
As outcomes in haemophilia are difficult to measure, it is very important for the patient groups and organisations involved to come together to consider which data and outcomes are to be collected. There are many benefits of collected data in terms of basic and/or general information, including the ability to review specific outcomes and results from current practices and these can be very useful in treating and supporting patients. The standard procedure of data collection for analysis involves anonymising data, regulating data access and storing data securely. This puts emphasis on patients to provide significant clinical information to create better treatment outcomes for the wider community of people with bleeding disorders.
In conclusion, data collection is deemed as the first step towards identifying knowledge gaps and comparison of results – so patients working together with HTCs and getting this right could definitely be considered a milestone in itself.
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