The Digital Landscape for HIV: A Metanalysis of Web 2.0 Content
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Abstract
Background
Patients with chronic conditions increasingly expect a direct dialogue with product manufacturers. The digital landscape has vastly altered relationships between patients and physicians: ‘e-health consumers’ are twice as likely to request a specific prescription, twice as likely to report that others rely on them to make health decisions and twice as likely to discuss information found online with their physician – 52% of online European adults used Health 2.0 (social media) content in 2009. Patients and carers are highly motivated to use digital channels to further medical and health knowledge and help manage their condition.
Methods
An observational analysis of web assets containing information about HIV and disease management tools was completed to generate a ‘digital landscape’ that users encounter when seeking knowledge or support. Each asset was reviewed using a scoring system of ‘reach, relevance, impact’ of the information, services, media, interactivity and utility of individual assets from commonly-used internet platforms common search-phrases. It is a snapshot of the user-experience at that point where they will act according to need. This approach assumes the user will not have extensive knowledge/awareness of manufacturer product/services. Two types of user-journey were completed to generate a patient and an HCP landscape and explore similarities/differences between the quality of information provided, Digital presence and provision of information and services of companies who manufacture therapies for the treatment of HIV were also reviewed.
Results
>50 sites were analysed as the natural user-search-journey commonly-used terms for information about HIV. The user journey generated encounters with several types of provider (charities, medical organisations, government sites, patient groups and pharmaceutical manufacturers). Overall quality of content and user-experience differed markedly between types of organisation and subsets of organisation. For patients, there was much dependence on social function and personal exchange with clear evidence of self-prescribing and challenging HCP recommendation through peer counsel; the quality of educational information from patient organisations was excellent however there was little opportunity for interaction with pharmaceutical companies nor for provision of disease management support. The HCP landscape was commendable with regard to provision of information and educational exchange notably through disease organisation sites. There was little evidence of the opportunity for HCPs to engage with manufacturers, No sites were dedicated to facilitating HCP-patient interaction.
Conclusions
BHIVA emphasise that good two-way communication between primary/community care providers and specialists is essential for optimal care of PLWHIV. Furthermore, researchers predict the total population of HIV-positive people attending NHS services will reach 78,370 and that HIV treatment and care services will cost up to £1,065 million. As such, there is a need for provision of services through digital channels to help offset rising costs. However, the digital landscape for information and provision of services to help PLWHIV and their HCPs is fragmented and sparse respectively. PLWHIV request online, confidential systems to talk directly to specialists about management of their condition and to use technologies to improve treatment compliance. Better use of digital channels and web 2.0 technologies to improve care and support options for PLWHIV is necessary.
Patients with chronic conditions increasingly expect a direct dialogue with product manufacturers. The digital landscape has vastly altered relationships between patients and physicians: ‘e-health consumers’ are twice as likely to request a specific prescription, twice as likely to report that others rely on them to make health decisions and twice as likely to discuss information found online with their physician – 52% of online European adults used Health 2.0 (social media) content in 2009. Patients and carers are highly motivated to use digital channels to further medical and health knowledge and help manage their condition.
Methods
An observational analysis of web assets containing information about HIV and disease management tools was completed to generate a ‘digital landscape’ that users encounter when seeking knowledge or support. Each asset was reviewed using a scoring system of ‘reach, relevance, impact’ of the information, services, media, interactivity and utility of individual assets from commonly-used internet platforms common search-phrases. It is a snapshot of the user-experience at that point where they will act according to need. This approach assumes the user will not have extensive knowledge/awareness of manufacturer product/services. Two types of user-journey were completed to generate a patient and an HCP landscape and explore similarities/differences between the quality of information provided, Digital presence and provision of information and services of companies who manufacture therapies for the treatment of HIV were also reviewed.
Results
>50 sites were analysed as the natural user-search-journey commonly-used terms for information about HIV. The user journey generated encounters with several types of provider (charities, medical organisations, government sites, patient groups and pharmaceutical manufacturers). Overall quality of content and user-experience differed markedly between types of organisation and subsets of organisation. For patients, there was much dependence on social function and personal exchange with clear evidence of self-prescribing and challenging HCP recommendation through peer counsel; the quality of educational information from patient organisations was excellent however there was little opportunity for interaction with pharmaceutical companies nor for provision of disease management support. The HCP landscape was commendable with regard to provision of information and educational exchange notably through disease organisation sites. There was little evidence of the opportunity for HCPs to engage with manufacturers, No sites were dedicated to facilitating HCP-patient interaction.
Conclusions
BHIVA emphasise that good two-way communication between primary/community care providers and specialists is essential for optimal care of PLWHIV. Furthermore, researchers predict the total population of HIV-positive people attending NHS services will reach 78,370 and that HIV treatment and care services will cost up to £1,065 million. As such, there is a need for provision of services through digital channels to help offset rising costs. However, the digital landscape for information and provision of services to help PLWHIV and their HCPs is fragmented and sparse respectively. PLWHIV request online, confidential systems to talk directly to specialists about management of their condition and to use technologies to improve treatment compliance. Better use of digital channels and web 2.0 technologies to improve care and support options for PLWHIV is necessary.
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