Deirdre Ryan
President, Pain Alliance Europe
One in four persons in the UK and one in five in the EU are living with chronic pain. What impact will the digitisation of health services and an EU data space have for people in pain?
Finding timely and accurate diagnosis is a challenge for many patients with most suffering for years before diagnosis and treatment. One surprising issue is that many people wait almost a year before seeking medical help with their pain.
An optimal use of digitalisation is the availability and reliability of accurate information on pain and when to seek help. Literacy, health literacy and digital literacy must be addressed. It’s crucial that basic and non-judgemental language is used at all touchpoints in addition to the healthcare setting i.e. online and within the community.
Digital health records, patient registries and data quality
The adoption of borderless digital health records empowers people to control their own health data. The WHO’s International Classification of Diseases (ICD-11 2022) includes coding for primary chronic pain for the first time. It is imperative each country implements ICD-11 and companion International Classification of Functioning, Disability & Health (ICF) to inform accurate diagnosis, treatment and capturing morbidity data internationally.
While large datasets are important for research and planning, pain is subjective and personal. The diversity of individuals, their pain and their needs must not be lost in datasets and statistics. Individualised interventions show the best outcomes. Therefore, it is tantamount that patients are engaged at each stage of development and rollout of digital interventions and policy.
The adoption of borderless digital health records empowers people to control their own health data.
Learnings of COVID-19 adaptations
Fortunately, many digital developments were implemented or fast tracked in response to the pandemic. However, how that looks at national level is inconsistent, as digital infrastructures vary greatly.
When surveyed, 49% of patients received telephone consultations or information during 2020/2021. Despite 40% preferring a video consultation only 10% had access to this solution. Overall, 27% prefer in-person interactions and another 27% said they had zero access to digital solutions. Each health system is facing challenges of backlogs and the impending tsunami of treating pain in long COVID, will digitisation truly mitigate this?
The digital world enables us to connect globally with others and feel less isolated especially while dealing with a health condition like chronic pain. Most of us will experience an episode of severe pain at some point in our lives. It is in all our interests to invest and support each other in adapting to digital changes.
References:
[1] PAE 2021 Diagnosis and treatment survey https://pae-eu.eu/surveys/
[2] PAE 2019/20 Pain and Covid-19 survey https://pae-eu.eu/surveys/
[3] PAE 2020 e-health and m-health survey https://pae-eu.eu/surveys/
[4] Eccleston, C., Wells, C., & Morlion, B. (2017). European Pain Management. Oxford, UK: Oxford University Press, ISBN: 9780198785750 Available at: http://oxfordmedicine.com/view/10.1093/med/9780198785750.001.0001/med- 9780198785750-chapter-1
