Below is an abstract that was selected for an ICMR-Short term project http://www.icmr.nic.in/shortr.htm in 2010 where the UDHC concept was planned to be utilized by one of the students to study its application and outcome around one disease. This is being shared here again as current students from the ArogyaUDHC-BMJ program http://journals.bmj.com/site/marketing/landing-pages/Indian_Caseelectives.xhtml have expressed an interest in wanting to apply for the ICMR-STS project primarily toward utilizing the ArogyaUDHC tool and studying its effects on various chronic diseases.
Title (upto 25 words),
Applying ‘User driven health care' to improve health outcomes in Chronic Obstructive airway disease utilizing online social networking and information communication technologies.
Introduction/Background (upto 150 words),
Chronic obstructive airway disease is a problem with considerable implications on morbidity, mortality and quality of life for those affected. (1). Improvement of health outcomes and quality of life can be achieved by a meticulous monitoring of patient parameters that requires informational continuity utilizing online learning and health education between multiple stake holders such as patients, their relatives and health professionals, a concept that has been recently termed “User Driven Health Care.” (2-5).
Objectives (upto 100 words)
To demonstrate the effect of online social networking through information communication technology on improvement of health care outcomes in chronic obstructive airway disease.
Methodology (upto 750 words),
Institutional ethical clearance will be taken for the study and all patients participating in this study shall sign an informed consent form (prepared in the patient’s own language).
Chronic obstructive airway disease patients presenting to People’s College of Medical Sciences will be selected according to our inclusion and exclusion criteria ( below) and will be initially evaluated with a complete history, detailed clinical examination and investigations following which the de-identified data shall be uploaded to an online platform http://www.udhc.co.in/ followed by further processing of these initial inputs onto a social networking web site (https://www.facebook.com/groups/tabularasa).
The patient will be monitored and followed up weekly by the student and an entire network of health professionals in the group.
The patient shall be assisted by the medical student to create the patient profile and the medical student shall enter regular/weekly status updates about her/his symptoms which will be shared with the primary physician in charge of the patient and a social network of care providers for their advice.
The quantitative component of this study will be a prospective, randomized controlled trial and patients will be allocated either to a ‘control’ group or to an ‘informational intervention’ group.
A St George’s respiratory questionnaire for COPD patients (SGRQ-C), standardized assessment tools will be utilized to assess the changes in quality of life at the beginning and end of the study period. The control group will be a similar COPD patient group who will not receive the above informational intervention. Quantitative outcomes will be compared at the end of the study period in terms of improvement in quality of life with and without the health informatics intervention.
a) Adult patients presenting to People’s College of Medical Sciences with a confirmed diagnosis of chronic obstructive airway disease established on clinical features suggesting progressive airway obstruction, pulmonary function tests and radiology.
Age 50-75 years; FEV1 70% of reference values; FEV1/FVC ratio 65%,
b) Availability of a mobile number and phone
Extremes of Age
Other co-morbidities and confounders
We shall assess the impact of informational therapy on the Quality of life in COPD using an unpaired t test with adjustment for baseline score.
A parallel qualitative approach shall enable us to identify themes during data collection, rather than test predetermined hypotheses. We shall incorporate a prospective component to capture participants' experiences and views at different stages during the screening process and to explore whether and how these changed after receiving their results.
Implications/Expected Outcome (upto 75 words),
a) The monitored COPD group will fare better than the unmonitored control group in terms of health care outcomes namely quality of life (measured quantitatively) and other hitherto unexplored and undiscovered facets of a patient living with chronic disease (measured qualitatively through open ended patient narratives).
b) This study would be an initiative to explore in detail the complex trajectories most of our chronic disease patients follow and are yet undocumented due to lack of informational continuity and poor access to the day to day lives of these patients.
Bibliography (upto 5 references)
- Ray D, Abel R, Selvaraj KG: A 5-yr prospective epidemiological study of chronic obstructive pulmonary disease in rural south India. Indian Journal of Medical Research 1995, 101:238-244.
- Biswas, R., Martin, C., Sturmberg, J., Shankar, R., Umakanth, S., Shanker, & Kasthuri AS. User driven health care - Answering multidimensional information needs in individual patients utilizing post EBM approaches: A conceptual model. Journal of Evaluation in Clinical Practice, 2008, 14, 742-749. http://www.ncbi.nlm.nih.gov/pubmed/19018905
- Biswas R, Smith K, Martin C, Sturmberg JP et al ( 2009) Open Information Management in User-Driven Healthcare, Chapter XVIII, in (Eds) Niiranen S, Yli-Hietanen, and Lugmayr, Open Information Management: Applications of Interconnectivity and Collaboration. Hershey, PA: IGI Global
- Biswas R, Maniam J, Lee EWH, Umakanth S, et al (2008 ) Electronic collaboration toward social health outcomes, in (Eds.) Salmon J, Wilson L, Handbook of Research on Electronic Collaboration and Organizational Synergy, Hershey, PA: IGI Global
5. Biswas R, Martin C et al., Social Cognitive Ontology and User Driven Health Care, in (Eds) S. Hatzipanagos and S. Warburton. Handbook of Research on Social Software and Developing Community Ontologies, Hershey, PA: IGI Global