Update of COMPAR-EU Data Management Plan
The Open Research Data Pilot aims to improve and maximise access to and re-use of research data generated by Horizon 2020 projects and takes into account the need to balance openness and protection of scientific information, commercialisation and Intellectual Property Rights (IPR), privacy concerns, security as well as data management and preservation questions.
Data Management Plans (DMP) are a key element of good data management. COMPAR-EU drafted a first version at the start of the project and describes how the data will be handled during and after the project, the types of research data that will be generated or collected during the project, the standards that will be used, how the research data will be preserved and what parts of the datasets will be shared for verification or reuse. This plan will be updated periodically. The first revision focused on improving the adaptation of the FAIR principles: making data findable, accessible, interoperable and re-usable. To this end we designed a new annex where detailed dataset descriptions can be shared, supported by example excerpts of the data and an electronic file with the database structure can be embedded.
Poster presentation on the development of COS
A lot of interested people were attracted by our COMPAR-EU poster on
“Prioritisation of patient-important outcomes in self-management interventions” (click on it to see it in full screen mode). One of our partner, OptiMedis AG, presented the development of the Core Outcome Sets (COS) at the 3rd symposium of a national network of health services researchers on 6th of May in Hamburg, Germany. The delegates were particularly interested in the process of patient involvement in our project. Obtaining patients´ unique perspectives and experiences ensures that research is relevant to patients. Self-management interventions aim to reduce symptoms, minimise disability, and improve quality of life. To determine the effectiveness of such interventions, patients´ views on the importance of such outcomes need to be considered.
The main emphasis of the symposium was on the transfer from research into practice. Questions like “How does implementation succeed?” and “What are the barriers?” were discussed from an international perspective. Really relevant to OptiMedis as the work package leader of WP9: Dissemination, exploitation and development of business plans. In COMPAR-EU, OptiMedis investigates various business models for the decision aids implementation and explores how the research findings can be best translated into routine clinical practice.
4th European Health Literacy Conference 14th – 15th of March 2019
“Health literacy (…) is not just nice to have. It is a ‘must-have’, and we ‘must-invest’ in enhancing it.” (Claudia Stein, Director WHO)
“Building Health Literate Societies” was the overarching theme of this year´s European Health Literacy Conference on 14th and 15th of March 2019. The conference was hosted by the University College Dublin and Health Literacy Europe. The programme focused on how to advance research, policy and practice regarding people’s capacity to access, understand, appraise and apply health information to improve their health and quality of life. In addition, the role of health systems was highlighted in the quest of reducing inequality in health within societies.
Health literacy is a critical dimension of self-management that is often not properly addressed.
As part of COMPAR-EU, one of our PhD students from Nivel, Marieke van der Gaag, presented a poster about her PhD research plans (click on it to see it in full screen mode). With the title “Towards optimal self-management support for chronically ill with low health literacy levels”, she attracted lots of interested delegates to discuss on how patients with low health literacy skills can be optimally supported in the self-management of their chronic disease. As part of her PhD, she will analyse which (elements of) existing self-management interventions (SMIs) are especially relevant and effective for these patient groups.
Finalising the analysis plan
In a two-day meeting on 27th and 28th of February in Barcelona, NIVEL, IR-HSCSP, UOI and FAD finalised the last details of the COMPAR-EU analysis plan. In this meeting, we’ve advanced our plans on how to deal with complex interventions in network meta-analysis (NMA) and how to best balance the trade-off between describing interventions in detail and ensuring that our NMA has enough statistical power. The whole discussion was based on the perspective of the end users of our results, with the goal of adding value to the knowledge on self-management of patients, professionals, industry, researchers and decision-makers. With this end-goal in mind we also worked on the last details of the coordination of all partners, covering all key steps of the effectiveness analysis: the extraction of data, data cleaning, descriptive analysis, GRADE quality analysis, pair-wise comparisons and NMA.
First Advisory Board Meeting
Our first COMPAR-EU Advisory Board meeting was a complete success! On 8th of February 2019 seven Advisory Board members came together with five COMPAR-EU team members in Paris. After giving an overview of the project and the progress to date, the exploitation of the project´s (expected) results was thoroughly discussed. Different stakeholder views were represented in the meeting: Patient, Clinician, Health Technology Assessment, Decision Aids and Patient Empowerment, Health System Innovation, Digital Health Investor, and Industry.
We appreciate all the valuable contributions helping to increase the project´s impact, the commitment of the members and the strong cooperation.
During the project timeframe of five years (till the end of 2022), the Advisory Board is expected to meet three times. In general, the Advisory Board advises the COMPAR-EU consortium on issues related to project goals and associated legal, ethical, and social issues. The members will play a key role in supporting the dissemination and exploitation of results.
Training sessions for COMPAR-EU data extractors
After completion of milestone 7 “Development of data extraction form, protocol, and guidelines and adaptation of software”, we already had a technical face-to-face meeting on 4th and 5th of October in Utrecht. All researchers that extract data participated, namely FAD, IR-HSCSP, Nivel. UOI attended the meeting via Skype to provide input from the perspective of performing network meta-analysis. At this meeting, IR-HSCSP also led a risk of bias seminar. Another training session was held on 3rd and 4th of December on how to use the online extraction form. Everyone practiced by using the form based on real-case RCT data extraction to ensure inter-researcher reliability. A discussion followed in which the online form was further adjusted to maximise the clarity of its concepts and instructions. The team agreed on the dates and deadlines for the rest of the extraction process.
Consortium Meeting in Utrecht
All COMPAR-EU consortium partners met on 22nd and 23rd of November 2018 in Utrecht. At this year´s consortium meeting, every work package leader gave an update on the progress and discussed the work ahead. The presentations were accompanied by executive and interactive group discussions. Nice to see further progress in this interesting project on self-management!
Set up of an International Advisory Board
We are happy to pronounce that eight experts have accepted their role as an advisor for COMPAR-EU. The members of our advisory board represent different stakeholder groups, including industry, clinicians, research, HTA, patient empowerment, health system innovation, digital health investors and patients. They were selected on the basis of their ties with relevant stakeholders and their experience and expertise in EU projects and research as well as project impact development. Sanda Hoyer of Philips GmbH Market DACH will chair the board. The advisory board advises the COMPAR-EU consortium on issues related to project goals and associated legal, ethical, and social issues. The members will play a key role in supporting the dissemination and exploitation of results.
During the project timeframe of five years, the advisory board is expected to meet three times. The first meeting will take place on 8th of February 2019 in Paris.
14th annual G-I-N conference
On 11th till 14th of September 2018, the G-I-N Annual Conference took place in Manchester, UK. This year´s conference was titled: “Why we do what we do: the purpose and impact of guidelines”. The conference was co-hosted by two founder members: NICE (The National Institute for Health and Care Excellence) and SIGN (Scottish Intercollegiate Guidelines Network).
The event was an exciting opportunity for all those who work with guidelines in health and social care to come together. A wide range of issues have been discussed, including the benefits of guidelines for patients and how they can support shared decision-making to address variations in care. It was an exciting opportunity to reflect on what peers are doing in the field of evidence-based practice, what challenges we face in the digital age, and the role that guidelines play in driving and enabling high quality care.
IR-HSCSP presented a poster on a scoping review of systematic reviews of how patients living with chronic conditions value the importance of outcomes for self-management. The aim of the review was to determine what outcomes have a bigger impact on patients’ daily life, how it is living with their condition, patients’ views regarding self-management, and barriers or facilitators for self-management interventions in the four conditions: Type 2 Diabetes, COPD, Heart Failure and Obesity. Based on the review, infographics were developed for our COMPAR-EU COS workshop on prioritisation of patient-important outcomes. The infographics were distributed at the beginning of the discussions as supporting material to clarify concepts or to provide guidance on patients´perspectives as reported in the literature.
Consensus on the most important outcomes
After the first two rounds of COMPAR-EU´s Delphi survey in May and June, a consensus meeting took place on 10th and 11th of July in Berlin, Germany. The first two rounds were only addressed to patients to gain their opinions on the most important outcomes for their respective disease. The purpose was to ensure that outcomes truly reflect patients’ priorities and preferences when it comes to selecting the most important outcomes, called the Core Outcome Set (COS). COS is an agreed standardised set of outcomes that should be measured and reported, as a minimum, in all clinical trials in specific areas of health or health care. In those first two rounds, patients were asked to electronically prioritise relevant outcomes using a Likert scale, ranging from 1 (lowest importance) to 9 (highest importance). In the consensus meeting, 20 patients, carers and their representatives were brought together with further 20 health care professionals, researchers and guideline developers from a diverse range of European institutions and organisations. Four panels (one for each condition: COPD, heart failure, type 2 diabetes, and obesity) were created to discuss and achieve consensus on the final COS to be included in the project. The purpose of this face-to-face meeting in Berlin was to solve potential tension between the perspectives of patients and those of researchers or clinicians, and the challenges that these different perspectives pose for COS development. Click here to read the whole report on the COS workshop in Berlin.