Sankalp has been involved in thalassemia management for last 3 years. What started as an initiative with very little prior experience and knowledge has blossomed into a comprehensive thalassemia management and care program. In the last three years we have benchmarked our performance with our won prior results and using the Thalassemia international Federation's guidelines for clinical management as the gold standard to compare against. Centres supported by us have indeed shown vast improvement in the quality of care being given to the thalassemia patients. However, there are limitations in this process. Comparing against our own centres past performance could lead to blind spots areas which we fail to take adequate notice of review after review. Comparison with the international standards too has its own limitations. The international standard is not adapted to the demography and actual scenario of our country. Our centres are often confronted with difficult questions like:
- Is the iron chelation therapy that we are employing showing results at acceptable rates?
- Are the complications we are observing more or less compared to what is expected in our country?
- Is the growth of the children in our centres in-line with the other thalassemiac children?
These questions are just representative in nature. There is a whole range of criteria on which a centre committed to working towards excellence and highest standards of quality of service may want to benchmark itself against.
Knowledge of where we stand as compared to our peers and as compared to what is acceptable has tremendous advantages. It allows one to realign priorities, identify loopholes, plan specific interventions and make best use of available resources. It also motivates the team to achieve higher standards and find personal and team-wide fulfilment. Such a benchmark of progress could also be crucial to convince the donors and promoters into investing more.
We at Sankalp are confronted with lack of sufficient data available in public domain to benchmark our work against. There are no defined quality standards by an independent expert committee which should be pursued. The lack of proper standards of care is forcing us to define our own. However, we firmly believe that a multi-institutional approach towards measuring outcomes and quality of care would be far more beneficial to all participating institutions in general and more specifically to the patients who we care for.
We are aiming at having a multi-disciplinary and a multi-institutional team identify key parameters to score the outcomes and quality of care upon. Once identified, we seek to invite several institutions to use the common benchmark for the purpose of periodic review of their progress. This should pave the way for the establishment of the first of its kind quality and performance assessment system for thalassemia management. We are confident that the obvious benefits of this approach will help strengthen the delivery of care for each participating institution.
We are inviting opinions and expressions of interest in participating in this program. Please feel free to write to us at sankalp.admin@gmail.com or send a letter to: Sankalp India Foundation, No. 460, GOKULA, 8th Main, 4th Block, Koramanagala, Bangalore 560034. Please also feel free to inform us that you want to be kept informed about this program and we will be happy to keep you posted.