[HGPI Policy Column] (No.52) From the Mental Health Project “Patient and Public Involvement (PPI) and Precision Medicine Approaches in Mental Health Care”
date : 1/23/2025
Tags: HGPI Policy Column, Mental Health
![[HGPI Policy Column] (No.52) From the Mental Health Project “Patient and Public Involvement (PPI) and Precision Medicine Approaches in Mental Health Care”](https://hgpi.org/en/wp-content/uploads/sites/2/HGPI_20241210_PolicyColumn_eyecatch.png)
<POINTS>
- PPI refers to patients actively participating, engaging, and collaborating in research involving them, where patients are expected to participate as partners rather than as subjects of research.
- In the field of psychiatry, personalized approaches and precision medicine approaches are warranted to provide optimal treatment for each individual patient.
- To promote PPI in Japan, it is necessary to eliminate the stigma associated with mental illnesses, clarify the definition and success criteria of PPI, and establish reliable tools for evaluating PPI.
What is Patient and public involvement (PPI)
Patient and public involvement (PPI) can be defined as the active participation, involvement, engagement and collaboration of patients in research pertaining to them. PPI involves making patients partners in research not just participants; it means that they are empowered to have a say in research concerning them because researchers understand that their contribution is indispensable to the progress of their research. The aim of PPI is to empower patients to be leaders regarding research that concerns them; however, PPI ranges from a continuum of simple participation to partnership and shared leadership in which shared leadership is hardly ever achieved.
PPI is vital to research because it is a necessary ingredient for advancing science and clinical research, improving and facilitating health outcomes and for promoting quality and meaningfulness in research. PPI is also imperative to establish true, long-term partnership with patients, which is an active dialogue in which all parties are fully involved in order to advance research. PPI renders research meaningful and effective, however, it demands long-term investment and dedication for it to be meaningful and effective not simply a quick-fix approach. PPI is critical to medical research because it empowers patients to have a voice and to make decisions regarding research that concerns them, for example decisions including their care, treatment and follow-up. Moreover, involving patients and the public in research can help to improve and facilitate patient choice, care, and shared decision-making thereby contributing to and resulting in research partnerships and changes to service delivery and patient outcomes. According to the adage ‘nothing about us without us’, medical research that aims to generate solutions and interventions for patients cannot be conducted without the input of patients. Without the active involvement of patients in medical research, research has no substance.
Precision Medicine and PPI (Patient and Public Involvement)
In the field of psychiatry, a personalized approach is warranted and PPI practice in research is a noteworthy factor in advancing precision medicine. The personalized approach considers the patient and their disorder from different perspectives (disease, dimensional, behavioral and life experience) before diagnosis in order to decide on the most effective treatment for the specific patient not the universal patient. The precision medicine approach, also known as measurement-based care, takes the personalized approach further by introducing measurable and quantifiable biomarkers that are unique to the patient to inform both diagnosis and treatment. The precision medicine approach collects biological data from patients (e.g., genetic) to understand deeper how their biology interacts with their social environment to produce the mental disorder. For both the personalized approach and the precision medicine approach to be successful, patients have to be actively involved as partners in research, not just as mere participants.
A unique aspect of psychiatry is that the source of most psychiatric disorders is unseen and remains unknown unlike biological or neurological illness where the source of the illness can be seen and is known. Therefore, to understand psychiatric disorders and further advance research concerning these disorders, the lived experience of patients with these disorders is important and has to be central to the research question. A categorical approach has dominated the field of psychiatry up until now; this approach is a phenomenological classification approach that posits that symptoms are very similar (or even identical) in all individuals with a particular diagnosis. This approach neglects the individual differences that exists between patients and also the influence of lifestyle and environmental factors. The phenomenological approach creates a universal patient and proposes that all patients are the universal patient. For example, any patient diagnosed with depression will be treated with antidepressants without properly considering and analyzing the source of the depression. This approach is limited as it fails to consider the individual differences between patients in terms of diagnosis such that there are different sources that may lead to depression in a patient and it is not the same source for every patient. Moreover, depending on the source of the depression, antidepressants may not be the most optimal treatment method as patients also differ in their response to treatment. Thus, a personalized and precision medicine approach is warranted in psychiatry.
In psychiatric research, patients are perceived as research participants only not partners in research due to the nature of their disorder and the detrimental impact that these disorders have on their daily functioning. However, to generate effective treatments and interventions and for research to progress, it is essential to look beyond impact at the quality of participatory research in relation to the ethical demands of people with lived experience, and to focus on the development of their capacities and, crucially, sharing power in domains other than just research (Dews et al., 2023). Moreover, their involvement cannot be regarded simply as instrumental but as a tool that has powerful ethical and political threads running through it.
PPI in Japan and Lessons from International PPI Practices
In Japan, the concept of PPI is still at its infancy and there is still a lot of progress to be made especially in the field of psychiatry. In other fields of medicine such as internal medicine, PPI practice is more established and has greatly advanced research in this field. The main factors for the lack of progress of PPI in the field of psychiatry are the stigma associated with psychiatric disorders; patients are disregarded and perceived as incompetent and unable to contribute any value to research. Moreover, there is a lack of consensus on the definition of PPI and what successful PPI should look like, as well as a scarcity of valid and reliable tools to measure PPI.
For PPI to progress in the field of psychiatry and for mental health research, it is essential to learn from what has worked well in PPI practice in other fields of medicine and in other countries. For example, the UK has made PPI practice the norm for medical research and they will not provide funding for research without PPI. The National Health Service (NHS) UK has made it clear that for personalized or precision medicine and community-based healthcare to progress, the patient’s voice needs to be at the forefront of research and therefore, PPI has to be the norm for research. Countries like Canada and the US have followed the steps taken by the UK in establishing PPI in psychiatry. PPI is not the norm in the US and Canada; however, it is widely encouraged and the US’ National Institute of Mental Health (NIMH) and the Canadian Institutes for Health Research (CIHR) generously fund research projects that have integrated PPI as part of their research plan.
Japan can also learn from the UK by placing PPI at the center of all types of research in the field of medicine. As Japan is in the process of transitioning from hospitalization to community-based care, putting patients at the center of research will facilitate this transition as community-based care is centered on the community’s needs. To care for the community in a productive and adequate manner, the needs of the community have to be well understood. For the needs of the community to be understood, the community has to be involved in research and their voice has to be heard and respected.
Policy and PPI
It is essential to have people with lived experience interact with policy-makers in the field of psychiatry. PPI in policy making has become increasingly important in recent years. PPI in policy-making can be described as policy decision making process conducted alongside and with the input of patients and or the public as partners. The key aspect for successful PPI in healthcare policy-making is a high commitment on the part of decision makers in health policy regarding PPI. The decision makers in question need to be willing to consider the lived experience of patients and the opinions of citizens in their decision making. Otherwise, PPI remains tokenistic without any impact on decision making and on the policies being made.
The knowledge that policy makers have regarding mental health and psychiatric disorders and patients suffering with mental illness is dated and inaccurate and often results in policies being made that do not actually address the needs of patients with mental illness. Therefore, having someone with lived experience as part of the advisory board is highly beneficial as it helps policy makers realize that the perspective that they had was false and inaccurate and to reexamine their approach to policy making. They are different factors that can influence the outcome of PPI in policy-making such as the political environment (political system), the decision-making context (addressed issue), attributes of the PPI group (diversity and characteristics), and the commitment of PPI organization. It is essential that these factors are carefully considered and thought through for PPI to be successful in the field of policy-making.
It is necessary that policy-makers interact with people with lives experience of mental illness as partners in policy-making because if healthcare policies are being made for people with mental illness and these policies influence the lives of people suffering from mental illness, it is essential that policy-makers interact first with these group of people before making policies that will affect their lives.
Conclusion
In conclusion, PPI is still a developing concept that has the potential to revolutionize the healthcare system and the way that research is performed. For PPI to thrive in the field of psychiatry, patients have to be perceived as valuable and their personal experience has to be perceived as indispensable to research. Broader frameworks and methods of involvement are warranted and central goals of involvement should focus on issues of inclusivity and representation, equalities, non-discrimination and empowerment.
References
- Baldwin H, Loebel-Davidsohn L, Oliver D, Salazar de Pablo G, Stahl D, Riper H, Fusar-Poli P. Real-World Implementation of Precision Psychiatry: A Systematic Review of Barriers and Facilitators. Brain Sci. 2022 Jul 16;12(7):934. doi: 10.3390/brainsci12070934. PMID: 35884740; PMCID: PMC9313345.
- Baumann, L. A., & Brütt, A. L. (2021). Public and patient involvement (PPI) in health policy decisionmaking on the health system-level: protocol for a systematic scoping review. BMJ open, 11(5), e043650.
- Boivin A, L’Espérance A, Gauvin FP, Dumez V, Macaulay AC, Lehoux P, Abelson J. Patient and public engagement in research and health system decision making: A systematic review of evaluation tools. Health Expect. 2018 Dec;21(6):1075-1084. doi: 10.1111/hex.12804. Epub 2018 Jul 30. PMID: 30062858; PMCID: PMC6250878.
- Carman, K. L., Dardess, P., Maurer, M., Sofaer, S., Adams, K., Bechtel, C., & Sweeney, J. (2013). Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health affairs, 32(2), 223-231.
- Češková E, Šilhán P. From Personalized Medicine to Precision Psychiatry? Neuropsychiatr Dis Treat. 2021 Dec 14;17:3663-3668. doi: 10.2147/NDT.S337814. PMID: 34934319; PMCID: PMC8684413.
- Colomer-Lahiguera S, Steimer M, Ellis U, Eicher M, Tompson M, Corbière T, Haase KR. Patient and public involvement in cancer research: A scoping review. Cancer Med. 2023 Jul;12(14):15530-15543. doi: 10.1002/cam4.6200. Epub 2023 Jun 16. PMID: 37329180; PMCID: PMC10417078.
- Crocker JC, Ricci-Cabello I, Parker A, Hirst JA, Chant A, Petit-Zeman S, Evans D, Rees S. Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis. BMJ. 2018 Nov 28;363:k4738. doi: 10.1136/bmj.k4738. PMID: 30487232; PMCID: PMC6259046.
- Faulkner A, Chambers M. Patient and public involvement in mental health research: En route to maturity? Health Expect. 2021 May;24 Suppl 1(Suppl 1):1-2. doi: 10.1111/hex.13250. PMID: 34018304; PMCID: PMC8137489.
- Peters ME, Taylor J, Lyketsos CG, Chisolm MS. Beyond the DSM: the perspectives of psychiatry approach to patients. Prim Care Companion CNS Disord. 2012;14(1):PCC.11m01233. doi: 10.4088/PCC.11m01233. Epub 2012 Feb 23. PMID: 22690367; PMCID: PMC3357579.
- Totzeck C, van der Meer AS, Christiansen H, Durlach F, Li Sanchez K, Schneider S. Systematic Review: Patient and Public Involvement of Children and Young People in Mental Health Research. Clin Child Fam Psychol Rev. 2024 Mar;27(1):257-274. doi: 10.1007/s10567-024-00470-x. Epub 2024 Feb 25. PMID: 38402358; PMCID: PMC10920437.
- Ocloo, J., & Matthews, R. (2016). From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ quality & safety, 25(8), 626-632.
- Troya, M. I., Chew‐Graham, C. A., Babatunde, O., Bartlam, B., Higginbottom, A., & Dikomitis, L. (2019). Patient and public involvement and engagement in a doctoral research project exploring self‐harm in older adults. Health Expectations, 22(4), 617-631.
- Scala JJ, Ganz AB, Snyder MP. Precision Medicine Approaches to Mental Health Care. Physiology (Bethesda). 2023 Mar 1;38(2):0. doi: 10.1152/physiol.00013.2022. Epub 2022 Sep 13. PMID: 36099270; PMCID: PMC9870582.
Authors
Favour Omileke (Program Specialist, Health and Global Policy Institute)
Kozue Matsumoto (Program Specialist, Health and Global Policy Institute)
Orie Yamashita (Associate, Health and Global Policy Institute)
Shu Suzuki (Senior Associate, Health and Global Policy Institute)
Top Research & Recommendations Posts
- [Policy Recommendations] Achieving a Sustainable Society of Health and Longevity Through the Integration of Environment and Healthcare-Incorporating a Planetary Health Perspective into the 3rd Phase of The Healthcare Policy-(December 20, 2024)
- [Policy Recommendations] Developing a National Health and Climate Strategy for Japan (June 26, 2024)
- [Research Report] The 2023 Public Opinion Survey on Satisfaction in Healthcare in Japan and Healthcare Applications of Generative AI (January 11, 2024)
- [Policy Recommendations] Cancer Control Project “Policy Recommendations on Addressing Regional Disparities in Breast Cancer Care” (January 31, 2025)
- [Research Report] Comparative Research Group on Local Regulations for Dementia Presents Final Report, “Toward Dementia Regulations for an Inclusive Society” (December 27, 2024)
- [Announcement] A Turning Point Towards Building Green Healthcare Systems (June 5, 2024)
- [Policy Recommendations] Obesity Control Promotion Project 2023 “The Next Steps for Engaging and Cooperating with Patients, Citizens, and Communities for Implements of Obesity Control Measurements” (April 8, 2024)
- [Event Report] Planetary Health Expert Meeting Aiming for Sustainable Healthcare: Learning from the Impact of Environmental Pollution and Medical Waste During the Pandemic (February 16, 2024)
- [Public Comment Submission] “Plan for Global Warming Countermeasures (Draft)” (January 26, 2025)
- [Research Report] 2019 Survey on Healthcare in Japan
Featured Posts
-
2025-01-22
[Registration Closed] HGPI Salon 2025 “Looking Ahead to the Future of Japan’s Social Security System” Session 1: Improving Productivity through the Streamlining of Healthcare and Long-Term Care Services and the Utilization of ICT (February 14, 2025)
-
2025-01-31
[Research Report] Comparative Research Group on Local Regulations for Dementia Presents Final Report, “Toward Dementia Regulations for an Inclusive Society” (December 27, 2024)
-
2025-02-01
[Announcement] Announcement of the 1st Kiyoshi Kurokawa Award Recipient
-
2025-02-07
[Publication Report] The Child Health Project Publishes Family Mental Health Booklet “Learning and Practicing at Home – Stress Management for Children with Intellectual Disabilities” (February 3, 2025)
-
2025-02-12
[Registration Open] (Webinar) The 131st HGPI Seminar “The Policy Process of the Kyoto City Caregiver Ordinance” (March 19, 2025)