To the best of our knowledge, this is the first study that carried out a systematic analysis of outcomes research resources in India as reported in published literature. We collected information relevant to 91 outcomes research resources in India and report details about each resource, bibliometric data of publications derived from these resources and researchers that conducted research studies using data derived from these resources.
We observed a predominance of registries and databases in India. Research registries collect long term clinical, health services and epidemiological data for a given population. They are essential to understand clinical and epidemiological trends as well as useful for policy analyses, planning and management of health care resources. (Roos and Nicole, Roos and Nicol 1999) (Broemeling et al. 2009). Databases are usually study specific or project specific. They are usually designed to collect data to answer a specific research question. The low number of EMR, EHR and HIS in India might be because of the fact that India has been slow in the adoption of biomedical and research informatics tools. Although having a wide range of advantages (Fraser et al., 2005) (Lobach and Detmer, 2007) (Mildon and Cohen, 2001) (Rustagi and Singh, 2012) concerns about privacy, reduction in clinical productivity, being resource intensive, (Rustagi and Singh, 2012) (Kluger, 2009) high purchase and maintenance costs make their adoption slower (Jha et al., 2009) (Hillestad et al., 2005).
We observed a geographical predominance of resources and researchers in southern and western zones indicating an imbalance. This imbalance may be further complicated by the fact that researchers from one zone may not have access to data from a resource located in another zone. This may significantly influence policy and funding decisions further resulting in a vicious cycle of resource duplication, under utilization of resources, and wastage of funding.
We also observed a predominance of Institutional and regional initiatives in spearheading/managing the resources. Although this trend is noteworthy and beneficial, it reflects small scale and medium scale research projects. National registries have their own importance in nationwide policy decisions as data cannot always be extrapolated from regional data. There are numerous examples of large scale nationwide initiatives like Nationwide inpatient sample (HCUP-US NIS, 2013), National Health Insurance Research Database (NHRI, Taiwan, 2013), Disease registries maintained by National Registry of Diseases Office (NRDO, Singapore, 2013) that have and continue to significantly contribute to national healthcare decision making and planning as well as in the improvement of quality of healthcare. Thus a balanced distribution of regional and national resources is essential. We also noted that most of the resources and researchers were located in Government or Privately owned academic organizations. Although a good trend, these organizations usually serve the urban population and provide tertiary care. Given the fact that India is largely an agrarian country, equitable distribution of resources into urban and rural areas would facilitate the collection of data that is truly representative of the Indian population. Policies derived from such a representative sample will be more effective than those based on extrapolated data that do not represent real life scenarios.
Most of the resources collected data on Cancer, Stroke and Diabetes. Given the significant rise in cancer, cardiovascular and metabolic disorders in India, (Takiar et al., 2010) (Young et al., 2009) this distribution appears to be moving in the right direction. Yet, it should be noted that there exists a vast difference amongst number of resources in each of these groups indicating a predominance of cancer resources. Accordingly, it prepares the case for the need of similar outcomes data resources for nationally prevalent diseases like Malaria, Tuberculosis. This can be implemented by incorporating relevant outcomes data variables in surveillance and national programs.
A predominance of publications derived from the short listed resources in international journals is a good trend as it helps disseminate results to a global audience. Yet the Journal impact factor (JIF) and citation index of these publications may be indicative of the quality and impact of results published. Training programs to help clinicians and researchers collect data using global accepted data standards and report them using standard reporting guidelines may make future publications reach a larger audience and gain higher impact. In this regard, a workshop on imparting outcomes research skills to medical faculty members was recently conducted with the aid of Indian Council of Medical Research. (Savardekar L, Shah J, Bacchav S, Kshirsagar N, Translating Ideas into Research Projects and Manuscripts in Outcomes Research:Experiences of An ICMR Workshop. unpublished observations).
Most of the registries and databases identified through this study have not been explored to their true potential. In most cases, data from these registries have resulted in one to three publications. Further, most of them do not have their own websites or web pages within their organization. Sharing of data dictionaries or actual data – a norm of current times is hardly applicable to these resources. This demonstrates that detailed information about these resources is not easily accessible. The Department of Science and Technology (India) conducted a National Survey on Resources Devoted to Science &Technology Activities (National Science & Technology Management Information System, India, 2013) but the resultant data is not publicly available. Secondly, the survey questionnaire does not capture granular information about research resources. Finally, we are not aware about its utility and effectiveness in facilitating collaborations and guiding policy decisions at a state and national level. It is thus evident that awareness of existing outcomes research resources in India is low thus impairing the ability of 1. Researchers and research groups to optimally utilize existing outcomes data for carrying out outcomes research studies and 2. Research policy makers to utilize resource availability and resource performance data while making resource allocation decisions.
Limitations
All efforts were made to do an exhaustive review of the literature but given the nature of research question and limitations in terms of keywords and filters, we may have missed relevant publications reporting information about outcomes research resources. Secondly, data resources and researchers are not the only factors that contribute to outcomes research. Factors like skilled manpower, training opportunities, availability of funding, institutional policy have a role to play. Since this information is not readily available on the web or in publications, we interpreted based on the data that was available to us. There is a need for national level initiatives to collect data about the location, capabilities and performance of outcomes research resources. Thirdly, we did not include keywords related to surveillance data in our search strategy as surveillance in itself is a huge area and beyond the scope of this project. We intend to pursue this in a subsequent study. Finally, although semi automated methods like natural language processing and computational ontologies could have been utilized to carry out data extraction and reasoning of data extracted from published articles (Lin et al., 2010) (Ceci et al., 2012), we preferred the manual method as 1. The number of relevant articles identified through an initial review was low and 2. To ensure higher quality of data abstraction.
