|Affiliation(s)||1Division of International and Humanitarian Medicine, University of Geneva, Geneva, Switzerland.|
|Country - ies of focus||Tanzania,Thailand,United Kingdom,United States,Vietnam|
|Relevant to the conference tracks||Chronic Diseases|
|Summary||Onset of Type 1 diabetes leads to a “biographical disruption” where the individual’s life completely changes. International standards for clinical management of diabetes exist, but fail to adequately consider the needs of individuals beyond those provided by the health system.|
|Background||Type 1 diabetes is the most common paediatric endocrine disorder and the second most common Chronic Non Communicable Disease to affect children after asthma. Type 1 diabetes is characterised with the need for life-long care including daily insulin injections, management of diet and lifestyle as well as regular check-ups. Diabetes highlights the problems of managing Non Communicable Diseases in many health systems as these are not currently organised for long-term care of individuals, but rather acute care. As these Chronic Non Communicable Diseases are now the leading causes of death in the world, health systems need a “paradigm shift” from an acute to a chronic care model. However, this shift focuses primarily on the organisation of the health system and not individual’s needs.|
|Objectives||The objective of this research is to identify non-medical needs for people with Type 1 diabetes and highlight that there is more to diabetes management than what is included in international guidance.|
|Methodology||It was decided to use a qualitative approach in this research using Grounded Theory as this provides a systematic framework for collecting and analysing qualitative data that is flexible and assists in the creation of theories “grounded in the data collected”. Small samples can be used in GT as the aim is to develop concepts and the relationships between different concepts. A qualitative design was used as this is a new area of study and has as its aim the development of a new theory. This meant that the interviews needed to be carried out in a flexible way allowing the interviewee to freely speak about their experience. Also, as the topics were unclear, as they were to emerge from the research itself, different questions or areas of investigation needed to be researched as the project advanced. Therefore any form of structured data collection tool would have made it impossible to investigate the depth and breadth of the issues. Interviews were carried out in 13 countries with a total of 100 individuals with Type 1 diabetes interviewed. The interviews were transcribed verbatim and analysed using NVivo software. This enabled needs to be identified and defined as "tangible" (being able to be provided by the health system), "process" (the way this element is delivered is important) and "intangible" (falling outisde the normal role of the health system).|
|Results||Needs can be viewed as tangible in that they can be provided by the health system, e.g. insulin, access to specialists, etc. Others are processes that entail a series of needs or actions to fall into place, e.g. proper diagnosis. Finally a third category that will be labelled intangible is when a variety of factors will contribute to these, e.g. routine, personality, etc.The tangible needs identified were: Access to specialists; Awareness of population; Community support; Control e.g. blood or urine glucose; Delivery of insulin; Family support; Financial aspects; Healthcare worker knowledge; Healthcare workers; Information and education; Insulin; Peers and Policies.Processes described by the interviewees were: Clear path of care - Organisation of care; Follow-up (Clinical); Management of diagnosis and Proper diagnosis.
Finally intangible aspects were: Acceptance; Active involvement; Adapting; Being Open; Being special - special treatment; Confidence; Cure; Discipline; Experience; Explanation; Hope; Independence; Knowledge; Motivation; Personality; Positive aspects; Psychological factors; Putting it into practice; Reassurance; Relationship with healthcare worker; Routine; Second nature; Stigma and Theory versus practice.
|Conclusion||Current diabetes management is far from perfect and it is argued that this is due to a disjuncture between what health professionals feel is the best way to manage Type 1 diabetes and the capacity of people with Type 1 diabetes and their families to manage this condition. It could be argued that this is due to more needs being "intangible" for people with diabetes than "tangible". Health systems, in their transition to the proper management of NCDs, need to include these "intangible" needs as they may impact diabetes management as much as the absence of tangible or process needs. Health systems will need to find effective ways of doing so. As Type 1 diabetes can be considered a tracer condition this work has an impact for other chronic conditions.|
The challenge from the Geneva Health Forum 2012 is to summarise what was an amazing few days of presentations, discussions and meetings of frontliners in health. 246 oral presentations including issues such as child obesity in Tunisia, innovative approaches of managing diabetes in Mali, how urbanisation is impacting people in Bangladesh, how atmospheric contamination is leading to increased hospitalisations in Barcelona, the challenges of over and under nutrition coexisting in the same societies and how noncommunicable diseases also exist in refugee and migrant populations, the challenge of access to medicines and the financial burden this means for many of the world’s poorest people and how the issues of justice and equity need to be included in the debate in how we address chronic conditions.
A total of 895 participants from 70 countries including policy makers, health professionals, academics and NGO frontliners all shared their view points and experiences and the sessions emphasised how complex the issue of chronic diseases is to address and that there is no magic bullet. Is it Youth empowerment or the use of new technologies? Is it redesigning health systems or putting more of an emphasis on primary health care? Is it addressing the way we all are living in a more sedentary and unhealthy environment or tackling the challenge in those who are most at risk? So many questions still remain after the Forum, but some key lessons:
- Research and its role to sometimes highlight the obvious, but to be used as an effective tool for project implementation, monitoring and evaluation and policy change
- Innovative approaches that are adapted to the context we work in, that are sustainable and scalable, but that technology should not drive the answer, but be one of many tools used
- We need a multi-discipline and multi-disciplinary approach and this will require changing the way we think about chronic diseases, how we teach medical and nursing students about chronic diseases and how we move the issue of chronic diseases from being something purely dealt with by the health sector to truly a whole of government and society approach
- The health systems clinicians work in, whether in Switzerland or Uganda need to be reorganised to address chronic diseases. This will require in some cases decentralisation of care to the primary health care level, development of new roles for health professionals, avoiding verticalisation and a disease based approach and integration of different aspects of the health system
- The role partnerships will play in addressing this challenge is necessary, however we need to address issues of conflict of interest and trust, but these can be overcome
Hearing from people with chronic diseases, innovators, philosophers, health system specialists, researchers, health professionals or policy makers the common theme was putting the individual with the chronic condition, the beneficiary of our actions and activities at the centre for what we do. We are all working as was stated by Sridhar Venkatapuram for the noble cause of improving health, in addressing chronic conditions we must not forget that we are working to ensure that children in Nepal do not develop cardiovascular risk factors, that people with sickle cell disease receive the treatments they need, when they need them, and that the health system should work for and with the person for improved health and not be a barrier to this.
In the session on innovation Mahad Ibrahim argued that space for innovation is necessary and the aim of this edition of the Forum was to provide such a space. With the issues addressed during the Forum it was not only innovative work that was presented, but also the approach to learning and sharing ideas at the Forum and not letting individual’s expertise get in the way of new ideas.
After the session on health systems Andy Williamson said he felt encouraged after having heard from a policy maker, an academic, someone working for an NGO and a clinician in a hospital. The challenge is great, but the inspiring and innovative approaches presented at the Forum show us what can be done and that the lessons presented will help in addressing chronic diseases in different settings and make a change to the lives of people living with chronic diseases throughout the world.
Reporting at the Geneva Health Forum also took an innovative and participative approach. Different participants contributed not only in terms of feedback on the sessions on content and quality, but were also able to give their perspectives on the content presented. Students from Boston University for example prepared presentations on their experience and what they learnt at the Forum. Students from the University of Geneva’s Institute of media, communication and journalism also attended some sessions and provided insight into how experts in the field of health communicate on certain issues. Travel grantees and other key participants reported on the sessions they attended by adding their view to the issues addressed. All this material is presented in the final report from the 2012 edition and the issues raised in this report will shape the discussions and content of the Geneva Health Forum in 2014.