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If you think patients are naive in seeking help and support, then you only see part of the picture. In the last ten years, patients have increasingly developed from “users and voters” to “makers and designers” and thus question the classic nursing paradigm. In the paternalistic model of medicine, health professionals appear like parents who give patients the best treatment without asking for their opinion. However, with increasing patient literacy and moral concerns about the patient’s “right to know”, progress is being made in recognizing the importance of patient values and experiences.
Patients live with their ailments every day and are their experts. This knowledge should be welcomed and valued throughout the treatment process as well as when designing and conducting research studies through patient involvement in science. Patients with a scientific background, patients with chronic illnesses who are experts in their condition, and those who have recovered from an illness can help others manage their illness and help researchers develop and design clinical trials. Knowing what patients want and how they want is essential to improving the effectiveness of clinical research and the resulting societal benefits.
Patients live with their ailments every day and are their experts.
What exactly is patient and public participation?
Patient and Public Participation (PPI) is essentially the research conducted by researchers with members of the public, and not for, about, or for them. Due to the change in the medical and social paradigm and the more active acquisition of information about therapy options, patients have gained decision-making power.
Recent developments require that researchers involve the public as part of any prospective research and then provide information about the study results. Only if they want to successfully receive research funding. Certain forms of health research, such as participatory action studies using qualitative methods, mixed methods studies, questionnaire validation, Delphi studies, and the development of clinical practice guidelines, actively encourage or require patient participation. On the other hand, original research or literature reviews rarely involve patients.
In the age of social media and improved connectivity, patients are coming together and patient organizations are becoming a reality. This can facilitate support and understanding, or most importantly, recognize the feeling of being a person suffering from an illness. Patient organizations recognize the willingness of patients with a serious chronic condition such as osteoarthritis to participate in public health programs, clinical research and studies. These partners are constantly looking for information to keep abreast of everything to do with their daily life: the disease and its symptoms.
How can publishers encourage public engagement?
What is science doing for me? Or how can I contribute with my knowledge? are two common questions on patients’ minds. However, answering this question can be complex, as reviewing scientific data and accessing the latest publications can be challenging for most laypeople. Science doesn’t often speak patient-friendly language, and partner organizations work to bridge the gap between patients and the scientific community by being the translators between these two worlds. The publishing community has begun to recognize its responsibility in providing and facilitating access to its discoveries for patients and the general public. In this context, journals can play a key role in breaking down academic language barriers by enabling patients and the public to contribute and write publishable authors “Patient Perspectives”.
Patient and Public Participation (PPI) is essentially the research conducted by researchers with members of the public, and not for, about, or for them.
Several other strategies could be implemented in peer-reviewed journals to welcome patients on board during the publication process and to ensure patient-friendly access to information. Some examples could be inviting published authors write a layperson’s summary their work (in one or more languages), a patient information, and or present an infographic easily accessible to the general public. These can provide practical advice to patients on screening, evaluating, and managing specific diseases based on the available evidence.
In addition, submission guidelines could be implemented to help identify the studies that meet the PPI guidelines, such as: the inclusion of the GRIPP-2 checklist. This requirement would help understand how patient participation would improve the results of these studies compared to studies without their participation.
The new normal
Innovations like creating and training a pool of dedicated patient reviewers Understanding their viewpoints and needs for submitted manuscripts, which were difficult to imagine a decade ago, could represent a revolution for patients and the scientific community. Scientific articles showcasing patient-designed and conducted studies to support patients are already a reality. For the past two years, the Osteoarthritis Patients Task Force, of which the author of this blog is a member, a global alliance of patient organizations fighting osteoarthritis led by the Osteoarthritis Foundation International (OAFI) and the Arthritis Foundation, published in BMC musculoskeletal disorders the results of a systematic review and global survey analyzing the perception of quality of life of patients with osteoarthritis and related factors. Both help to raise patient awareness of the condition and perspectives of patients with rheumatic and musculoskeletal diseases.
We have entered an era of patient centricity, perspective, independence and personal responsibility. There is still a long way to go, but we have already taken the first steps. When patient organizations and the editorial board of international journals join forces to make patient perspectives more visible, groundbreaking changes in health research can take place.