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Why chronic pain patients’ voices are important!
WRITTEN BY
Joop Van Griensven
President, Pain Alliance Europe (PAE)
Chronic pain patients’ needs to live better with chronic pain must always be considered in developing research, therapy and social/psychological/economic support.
Surveys into chronic pain patients’ needs
Getting to know the chronic pain patients is the first step in finding out their needs. The complexity of the patients’ needs extends beyond health issues into wider aspects of their lives. For that reason, Pain Alliance Europe (PAE) does annual surveys, which started in 2017. Over the last four years, the topics have been: ‘Diagnosis and Treatment’, ‘Work and Income’, ‘Stigma’, and, this year, ‘eHealth and mHealth’.* There is a logical line in these surveys as they explore areas that are important for patients. The medical part, the social/ psychological part, and the economic part. This, combined with new technologies that patients may be using, gives a good indication of their needs.
Transforming data into patient care
Once the surveys are complete and the analyses published, we publicise these results to the main stakeholders: healthcare professionals (HCPs), policymakers, politicians and researchers. We do this by participating in events in the European Parliament and organising our own events. We present the outcome of these surveys and we ask for replies from the stakeholders. We are invited to attend HCPs’ symposia where we can provide abstracts on the results and, where possible, get involved in discussions.
Using the outcome of these events, together with the survey results and the wishes of our members, we help develop recommendations to give to politicians and policymakers. We publish these recommendations in our newsletter and on our website and also on the EU Health Policy Platform.
Patient input to research is very incredibly beneficial for all
When analysing the survey results, it is easy to identify several topics that need further research. The answers given by the patients are an excellent source for young and also established researchers to work on.
However, they need to do this with patients or patient representatives because the patients have provided information about what is needed.It is therefore logical they should be involved in formulating the research questions. This ensures the research will be on aspects of the needs identified by the patients.
When patients are involved in the process of creating a research project
and included on ethical and advisory boards, it guarantees researchers don’t forget for whom they are doing this. Patients participating in the dissemination of the results will help ensure the right people are seeing them and that the results are not only for the happy few who read scientific papers.
Our end goal is to improve people’s lives
PAE has a very clear reason for developing these surveys, making sure the analysis is done by experts and publicising the results, ensuring the outcome reaches a broad audience, transforming the results into recommendations for policymakers and politicians, and encouraging researchers to investigate the omissions identified by the patients. The reason is the mission of PAE: “Improve the quality of life of people living with chronic pain in Europe.” These efforts should help PAE to reach the stage where we have completed our mission.
*The 2020 survey will close in June and the results will become public in August. The other surveys are published on the PAE website www.pae-eu.eu/surveys where all the reports are available.
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