Over the past few years, clinicians and researchers have come to realize that it is necessary to get the public involved in clinical trials. This allows the trials to become more targeted and effective, ensuring that the patients are treated more as participants and less like objects to be experimented on, improving the patient's experience and democratizing the process.
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Importance of Patient Panels
Patient panels play an important part in clinical trials. They ensure that the patients have more influence over the services provided to them by the health care system. This ensures that both the patients and researchers have a more rounded idea of what is expected of them and the trial's outcome, leading to a more successful and effective trial.
The patients being more aware of the processes in place for their care ensures they have a clearer idea of their secondary care options and what they entail. Through conversations with the public and participants in trials, the health care professionals build a clearer idea of what their patients need and expect. This ensures that all parties involved in the trial are clear on the outcome and what to expect.
The engagement of both service users and carers leads to many advantages, such as raising awareness on issues affecting the patient and ensuring the clinical staff has the capacity and training to tackle the issues. This also prioritizes essential issues to both the patient and healthcare professional, improving the overall experience for everyone involved.
The wider community also benefited as the participants in the trial gained insight into the healthcare system's working and ensured that the healthcare professionals and the wider community create dialogue, ensuring that the patients' needs are always represented and considered when decisions are being made. There is also the opportunity for participants to become involved with other projects benefiting the community.
The Process behind Patient Panels
It is easy to become a member of a patients panel, and many individuals in the wider community have been contacted by their healthcare professionals to be asked to participate in trials. There may be a slight bias in choosing participants as clinicians actively involved in the trial will recruit their own patients. This leads to an unbalance in the representation of some ethnic and socioeconomic groups that must be addressed.
The involvement of patients in the clinical trial process is beneficial for both parties. The patients participating in the trial feel empowered and gain an insight into the process, whereas it has been shown that patient participation increases the integrity of the study. This is through considering all the party's interests and establishing routes of communication early in the process that ensure issues are dealt with before becoming a significant hindrance.
Although there has been a large move towards patients having more say in the treatment options available to them, there is still resistance within the research community. This could be due to the misconception that patients are not needed to play such a significant role in the research process and are only needed to trail the processes in the next production stage.
This is an attitude that must change if the quality of healthcare offered to patients continues to rise and become more efficient. There have been changes in the research process in recent years, although these tend to be predominantly designed to create the illusion of change without affecting the process.
Patient associations have been seen to be taking up the responsibility of leading their own research projects. Projects like 23andMe and PatientsLikeMe have been seen to completely change the research process and ensure that the patient's needs are the study's foremost priorities. These research projects are not a joint venture, but it is thought that they will pave the way for a novel way of performing research and collecting data that's more centered around patients and their needs.
The general public is exposed to a lot more misinformation than in previous years, and it must be ensured that the information they have access to is correct and relevant. By using patient panels in clinical trials, the scientific community ensures that the wider public is informed and up to date with current research and important issues. This also breaks the mystery and elitism surrounding scientific research that some of the public harbor.
Future Directions
The importance of patient panels is beginning to be recognized by the broader scientific community and will hopefully lead to more patient involvement in clinical trials and research. Their role in these trials is becoming increasingly important as patients want more say in the treatment options they are offered and the research being undertaken. The increase in patient participation is a positive development for both parties involved.
References:
- Cunliffe, B. & Boughton, V. (2012). Getting started: A step-by-step guide to setting up patient panels in secondary care. Clinical Services unit. https://www.bad.org.uk/
- Sacristan, J. et al., (2016) Patient involvement in clinical research: why, when, and how. Patient prefer adherence. https://doi.org/10.2147/PPA.S104259
- Schilling, I. et al., (2019) Patient involvement in clinical trials: motivation and expectations differ between patients and researchers involved in a trail on urinary tract infections. Research Involvement and Engagement. https://doi.org/10.1186/s40900-019-0145-3
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