By Dr Tom Foley.
Dr Christina R. Åkerman is President of ICHOM. Between 2008 and 2014, she served as Director General for the Medical Products Agency (MPA) in Sweden, a national agency employing approximately 750 people and under the aegis of the Swedish Ministry of Health and Social Affairs. During this period, she was also a Member of the Board of the European Medicines Agency (EMA), which is responsible for the scientific evaluation of medicines for use in the European Union. Before her position with MPA, Christina served as Vice President Medical of AstraZeneca Sweden as well as Marketing Company President of AstraZeneca Philippines. She has also been working chair of start-up companies and is currently on the Board of Fouriertransform, a Swedish state-owned venture capital company. Christina received her medical degree from the University of Linköping. She wrote her doctoral thesis in Clinical Physiology and is a specialist in Clinical Pharmacology. She has an Executive MBA in General Management from the Stockholm School of Economics.
The International Consortium for Health Outcomes Measurement (ICHOM) is a non-profit organization founded to transform health care systems worldwide. Its mission is to unlock the potential of value-based health care by defining global Standard Sets of outcome measures that really matter to patients for the most relevant medical conditions and by driving adoption and reporting of these measures worldwide.
Progress of ICHOM’s Standard Sets
By 2017 the aim is to have published 50 Standard Sets covering outcome measurement for more than 50% of the global disease burden in developed countries. Currently 12 Working Groups have completed Standard Sets, representing 35% of global disease burden in developed nations, with 8 more Standard Sets slated for completion in 2015 (4 already in progress).
In parallel with the development of the Standard Sets, ICHOM also supports implementation and aspires to enable benchmarking communities. There are currently 300 Working Group members who have helped to develop the ICHOM Standard Sets, and 13 registries and nearly 60 partners are already measuring or are working towards measuring one or more Standard Sets. However, the real figure of those using the Standard Sets is difficult to estimate as they are freely available online. Overall there has been involvement from 18 different countries.
The Working Group is key to the success of implementation as it creates a community of value-oriented individuals around the world who are committed to measuring health outcomes. These communities subsequently aid participation and implementation of the Standard Sets and their adoption as the global standard to measure health outcomes. ICHOM tries to facilitate the creation of these communities as they allow partners to support each other and make it possible to benchmark within their organisation, their community, their country, and even internationally.
In the future, there will also be the opportunity for learning collaboratives, where organisations are brought together and can compare outcomes, benchmark against each other, and identify areas for improvement in care in order to increase value.
Buy-in from both senior management as well as clinical leadership is critical. The Working Group members who developed the Standard Sets are well known and well respected clinicians, and clinical leaders are often quickly convinced of the value of measuring Standard Sets. However, these clinical leaders may not be in the management of their provider organisation and thus may not have the mandate to implement the Standard Sets, and therefore it is essential to gain buy-in from the senior management as well.
It can be difficult to gain traction with the senior management of provider organizations if they do not see the benefit from outcome standards and instead focus on potential costs. Management teams often raise concerns regarding the burden of work and potential workflow impact, highlighting that there should not be duplication of existing data collection. However management teams are starting to realise that what they currently measure may be a lot of administrative data and process measures that do not represent value for the patient and recognize the need to shift focus to outcomes.
Data collection is one of the main challenges, and in particular, integration with IT systems. The Standard Sets are developed with a focus on what the most important outcomes are for a specific condition, rather than a consideration of how they might fit within an IT system. However, the Working Group does consider the feasibility of measuring the Standard Set on an international level as part of its process.
Some innovative, smaller suppliers of electronic records have shown that it is possible to incorporate Standard Sets into the EHR. There is also increasing interest from larger suppliers of electronic medical records to do so as well. For example, MD Anderson is in discussion with Epic to incorporate the Standard Sets into their EHR solution. Given that there are different approaches to data collection across different organisations, it is important to maintain a community of implementers to support each other and to help organisations find the most appropriate method or IT solution for them.
Cost is a big consideration for management teams. There are a number of innovative ways of collecting measures. There are multiple ways to collect data, ranging from pen and paper all the way up to incorporation into electronic record systems and online surveys before visiting the doctor.
This model is scalable with the aid of the associated communities. They can help assist in developing methods of data collection and benchmarking. These communities and early adopters can demonstrate the use and utility to others and showcase the methods.
ICHOM aspires to support the establishment and scale up of a global benchmarking program based on ICHOM Standard Sets in the next few years. It is still at an early stage and for the moment the focus is mainly on the collection and recording of outcomes data, which is a critical first step. A number of organisations have implemented elements of the Standard Sets but not in their entirety and are still moving towards full implementation, and so we are focused on supporting successful implementation. However, there is strong momentum for Standard Sets to be adopted, and ICHOM anticipates that as more organisations become involved and join the ICHOM community, that there will be sufficient volume of outcomes measurement to enable the first full Standard Set benchmarks to begin a pilot next year. That will be the first step in the development of full benchmarking, which ICHOM aspires to scale up from the initial pilot phase.
So far, the Standard Sets have not been heavily used for research, as this is not their primary purpose. For a research focus, there may require additional data to collect which goes beyond the scope of the Standard Sets. The Standard Sets are intended as “minimum” data sets, and as such, many organizations may wish to add supplemental data measures for research purposes.
In addition, quality registries may find it difficult to fully align with ICHOM Standard Sets if there is no existing infrastructure to collect patient-reported outcomes (PROs), which are an essential component. However, there is increasing interest in incorporating PROs into registers, and there is opportunity to begin new registries based on Standard Sets as well. This can expedite the launch of new registries by simplifying the process of selecting which indicators to measure.
There has been huge progress over the last few years and there is confidence that this will continue.
In five years’ time: There will be a completely different landscape for outcome measurements. There will be much more focus on the patient, with reimbursement to providers based on outcomes and results for patients.
Further into future: Is difficult to predict. There is hope that the development of standardised outcome sets will become a catalyst for further work and that many more countries will adopt this perspective on healthcare.