Piloting the Patient Engagement Quality Guidance in health technology assessment

by | 18 Jun 2019

Health Technology Assessment (HTA) organizations aim to ensure that medical interventions have measurable benefits for patients, provide clinical effectiveness and are cost-effective within the context of the general health system and the population it serves. Many HTA bodies in Europe have processes to capture and reflect the patient perspective in their assessments but there is little information on how well these work in practice.
The Patient Engagement Quality Guidance (PEQG) is being piloted to see if it can help identify what good practice for patient engagement (PE) in HTA evaluations looks like, as Krystallia Pantiri, Research Consultant at Pharmerit International explains.
Can you describe your project in short?
In 2017 we were contacted by the European Federation of Neurological Associations (EFNA) to assess the landscape in the EU for PE in HTA. We were asked to identify opportunities and challenges and to see if there was anything specific to HTAs for neurological disorders. We did a literature review in six EU countries (Sweden, UK, Germany, France, Poland and Spain). We wanted to know how patients interact with HTA agencies, what impact they had on HTA decisions, how PE is perceived and how it can be improved. We also wanted to understand how best to bring the patient perspective into HTA discussions and how to empower patient groups to take part in these discussions. After the literature analysis, we conducted interviews with HTA experts and patients/patient representatives from three countries (UK, Germany and France) – chosen to reflect the diversity of HTA approaches and experience across the EU.
Why did your project need to use a tool like the PEQG?
After the interviews, we had lots of rich information and we needed a framework as a reference point to analyze the responses from interviewees. The PEQG provided us with a robust and structured tool to assess each of the PE practices and to drill down to what demonstrated quality, what was missing and what could be improved.
How did you plan to use it?
We planned to use the seven PE Quality Criteria within the PEQG as a simple checklist so that we could assess all the responses against each criterion to allow us to make comparisons.
How was the Guidance particularly applicable to your specific project?
Our aim for the project was to provide recommendations for EFNA for more effective and meaningful PE, including advice on the skills and tools or resources needed. But actually, the use of the PEQG widened the net – we were able to make the most of the data we collected which was so much more than a list of recommendations. This prompted us to start developing a publication to share our results with the wider PE community.
Using the PEQG has made our study and the findings more scientifically robust, and relevant to different stakeholders. It also allowed us to categorize responses from the interviews against the PE Quality Criteria to provide a benchmark for comparison, using consistent language and definitions.
Did you have an idea of how it would benefit the project?
We believed that using the PEQG would make interpretation of our ‘qualitative’ data from the interviews easier and more consistent and it did. What we also found was that the PEQG gave us a snapshot overview of current PE in HTA including gaps and areas for improvement – the PEQG gave us a tool to identify what an ideal model for PE in HTA could look like.
Inspired to pilot the PEQG in one of your projects? Find out more

Get the latest information on Patient Focused Medicines Development and stay connected with our activities.