Travel date: May 18, 2022
Name of Meeting/Event/Activity: 12th EAPC Research Congress of the EAPC
Origin: Nairobi, Kenya / Destination: Rome, Italy
I am a population health research scientist based in Nairobi – Kenya with special interest in palliative care and cancer research. Research is dynamic and there is always need to keep up to date on new information. Meetings like the EAPC Research Congress are important avenues to share new information and knowledge, and to build networks.
There were very many interesting posters, presentations and highly thought-provoking question and answer sessions. This was a wonderfully organized congress with so much to learn.
We need to engage with stakeholders; patients, their relatives, medical caregivers, policy makers etc. at the start of new projects in order to understand the real issues that are important to them. Resources are scarce and those that are available should be directed to research where findings will be useful. Research on issues experienced by very ill patients or those nearing end of life can be tricky considering that this is a time when patients need time alone or with those close to them without being burdened with questionnaires and bedside interviews. Dr. Lucas Morin (France) and Dr. Tobias Steigleder (Germany) offered some solutions. Portable/wearable devices and patches are now affordable and can be used to collect data with minimal intrusion. Patches can be placed strategically on the patient’s body and can collect lots of data within seconds. Radar systems can be placed under the mattress to estimate prognosis which would guide treatment planning. Apps on mobile phones/tablets can be used to monitor compliance, effects and side effects of medication in order to guide palliative care teams on home visits’ planning. Dr. Steigleder emphasized that even with these kinds of technological advancements, they should not interfere with the need for social interaction and personal care which are core to palliative care.
Prof. Julia Downing (United Kingdom) and Dr. Eve Namisango (Uganda) made a call on the need to involve children in decision making and research. On whether it is ethical to carry out research among children, Prof. Downing asserted that “it is not ethical not to undertake research in children’s palliative care”. An evidence base is required in order to provide quality palliative care to the children who need it. Prof. Downing and Dr. Namisango acknowledged the challenges of engaging children in research. Many challenges exist but these are being overcome and the evidence base is growing through increase in research publications as years go by. Close collaboration and compliance with gatekeepers (family members, medical caregivers and ethics committees) is essential. This allows for useful tips on how to effectively go about collecting the data. Dr. Namisango has carried out research among children and has successfully collected data through constant guidance from caregivers and through music, art and play as well as providing gifts during and at the end of the sessions. The provision of gifts should however not be communicated before consent because it can be associated with coercion. Researchers should seek guidance from local ethics review boards.
Big data (routinely collected clinical practice data, administrative registry data and healthcare claims data) can be used to overcome the difficulty of recruiting and retaining participants in palliative care research. However, there are challenges of using big data for example quality issues and absence of information that really matter to patients like their experiences and quality of life measurements. Big data does not come in the usual structured formats and tables. It needs to be carefully reorganized (data wrangling) before analysis. Dr. Morin summarized that the use of big data for research “will make a difference if we can leverage high quality information to ask questions that matter in order to provide answers that are useful”.
This is a wonderful program. It would be great to have more scholars participating if resources would allow.