Patient Support and Advocacy
Improving Disease-Related Literacy for Patients, Their Families, and Society
Public Lectures
Sumitomo Pharma holds public lectures nationwide not only for patients and their
families but also for the wider general public with the objective of promoting the correct understanding of
diseases and contributing to the solving of social issues.
In fiscal 2022, we organized 16 public
lectures on Parkinson's disease (PD) and dementia with Lewy bodies (DLB), 9 on diabetes and 2 on mental
illness. The lectures were held mainly online to prevent the spread of COVID-19. The common theme of the
lectures on PD and DLB was "Looking to the future, contribute to a fulfilling lifestyle for patients and their
caregivers," while that for the lectures on diabetes was "Importance of early treatment for
diabetes."
The total number of attendees for the lectures was around 1,800 and about 60% of them
responded to the questionnaire given afterwards. More than 90% of respondents evaluated the content of
lectures positively.
In fiscal 2023, focusing on social issues concerning patients, their families and
caregivers, Sumitomo Pharma will make efforts to enhance the content of our activities to further contribute
to raising disease literacy among the public.
Results of Questionnaire on Public Lectures Held in Fiscal 2022
Needs
Comprehenson
Satisfaction
- *The same questionnaire was given for all lectures, calculating totals for responses. Multiple responses were not allowed.
Comment from the Person in Charge
There are various social issues surrounding patients, their families and
caregivers.
One of them is stigma* against diseases. For instance, psychiatric diseases are commonly
developed among the younger generation but, due to fearing stigma, some people may hesitate to see a
doctor. It is important to create an environment in which there is no hesitation toward early discovery,
early consultation and examination by reducing the stigma against psychiatric diseases through the correct
understanding of them by the patients themselves, their families and society overall. There is also a
stigma against diabetes, where in the present situation, patients can lose the chance for proper treatment
by hiding their diabetes from the people around them.
As a pharmaceutical company, we consider that
in addition to providing pharmaceuticals, we also have to play a role in solving social issues. By
promoting a correct understanding of diseases, Sumitomo Pharma aims to help create a society in which
patients can lead their lives with peace of mind.
*stigma: Prejudice arising from
incorrect
understanding
Shinjiro Kori
CSR Group, Corporate
Communications
(The divisions that the person featured in this article belonged to and the names of
those divisions are current as of the time of the interview.)
Providing Disease Information for Patients and General Public on Health Information Websites
Explaining Schizophrenia and Bipolar Disorder in Simple Terms
Through Kokoro Share (https://kokoro-share.jp, available in Japanese only), we provide patients and their families with accurate information on schizophrenia and bipolar disorder in an easy-to-understand manner, and contribute to appropriate diagnosis, treatment and a better life. In June 2023, we added "Interview-style video on pointers for continuing employment" on our schizophrenia-related website. In the video, a patient, an employer and a supporter give pointers for finding a job as well as continuing employment.
Rehabilitation for Parkinson’s Disease through Cooking
The concept of Rehabili Kitchen for Parkinson's Disease Patients (https://healthcare-sumitomo-pharma.jp/disease/parkinson/kitchen/index.html, available
in Japanese only) is rehabilitation during cooking to increase awareness of each individual
movement.
We introduce cooking-themed rehabilitation that can be done at home with
videos.
Finding out what movements they are capable of, our hope is that patients will spend their
days in a healthful way while sharing the enjoyment of cooking with family members or caregivers.
Daily Self-Care Matched to Lifestyle of Those with Type 2 Diabetes
"Diabetes My Care Notebook (https://healthcare-sumitomo-pharma.jp/disease/diabetes/, available in Japanese only)" provides information on daily self-care through diet and exercise for those diagnosed with type 2 diabetes, which they can start straightaway. It includes both things that are simple to do and things that require a bit of preparation, so we hope that people will adopt dietary and exercise therapies that are easy to continue in their daily lives.
Supporting People with Psychiatric Diseases in Finding Employment and Social Reintegration
Support through Special-Purpose Subsidiary "Cocowork"
Low employment retention rates among people with psychiatric diseases is a social
issue. In addition to focusing on drug discovery for psychiatric diseases, Sumitomo Pharma engages in
initiatives to support people with psychiatric diseases that are difficult to resolve with medication alone in
taking up employment and social reintegration. Among them is the establishment of our special-purpose
subsidiary Cocowork Co., Ltd. (https://www.cocoworkjoy.com/, available in Japanese only).
At Cocowork, employees
with
psychiatric diseases grow leafy vegetables such as frilled lettuce, arugula and Swiss chard hydroponically,
which are sold to supermarkets and restaurants. It also provides vegetables to children’s cafeterias as
the donation from Sumitomo pharma. In addition, a collaboration with Hiro Coffee, a popular coffee shop in
Osaka and Hyogo Prefecture, has been started.
Going forward, Sumitomo Pharma will continue to support the
employment of people with psychiatric diseases through the initiatives of its special-purpose subsidiary
Cocowork Co., Ltd.
Collaboration with Patient Groups and Promotion of Support Activities through Donations
Support for Patient Groups in Japan
Under the slogan of "Innovation today, healthier tomorrows" Sumitomo Pharma engages in patient support activities with the aim of "Allowing all patients and their families to lead healthy, fulfilled lives."
Main Donations in Fiscal 2022
- The National Federation of Associations of Families with The Mental Illness in Japan
- Japan Patients Association
- Network for NANBYO Children of Japan
- RDD JAPAN Organization
- Japan Parkinson's Disease Association
- Dementia People and Family Association
- Children's Cancer Association of Japan
- Japan Epilepsy Association
- Japan Narcolepsy Association
- Japan Amyotrophic Lateral Sclerosis Association
For more information on patient support activities in Japan and other countries, please see "Activity Reports."
Transparency in Collaboration with Patient Groups
With representatives of patient groups sitting on an increasing number of government committees and investigative commissions as governments and the medical community put greater emphasis on the "voice of the patient," patient groups have become important stakeholders in the mission to improve medical care.
In light of this, we consider that it is crucial for the broader society to be aware of and have an understanding of the fact that all collaborations with patient groups take place in accordance with high ethical standards.
The Japan Pharmaceutical Manufacturers Association (JPMA) issued its Transparency Guideline for the Relationship between Corporate Activities and Patient Organizations on March 14, 2012. As a member of JPMA, we have responded to this by adopting our own Guidelines Concerning Transparency in Collaborations with Patient Groups in April 2013. We will publish information concerning funding and other support we provide to patient groups and patient advocacy groups through our website, in accordance with this guideline.
Guidelines Concerning Transparency in Collaborations with Patient Groups
Sumitomo Pharma Co., Ltd. (the “Company”) has set its commitment to society as its Mission. To realize its Mission, the Company is making efforts such as sincerely executing corporate activities, proactively disclosing information, and properly managing information based on the Declaration of Conduct which explains its basic stance on corporate activities.
The Company is collaborating with patient groups, etc., its important stakeholders, to contribute to people’s healthcare and well-being in the future. The Company publishes information on matters including monetary payments to patient groups, etc. (hereafter “patient group collaboration information“) based on the Guidelines prescribed hereunder, adopting the enhancement of transparency in those collaborations and its transformation into a company capable of winning greater public trust as its goals.
- ① Definition of patient groups, etc.
Patient groups, etc., as used herein, shall refer to groups organized by patients and their family members, or by their supporters in Japan. Patient groups, etc. shall represent the opinions of patients, and support patients and their family members. At the same time, they shall seek to achieve goals such as improvement in medical treatment conditions, and in principle, have roles and objectives defined in their articles of association and regulations. These groups may be in all forms (including patient associations, support organizations, incorporated associations, and nonprofit organizations). However, groups that adopt approaches involving medical practice—such as disaster rescue operations and activities for supporting medical technologies—shall be excluded from patient groups, etc. - ② Time and method for publication
The Company shall publish patient group collaboration information for each fiscal year (April 1 each year to March 31 the following year) on its official website after the announcement of financial results for the concerned fiscal year. - ③ Scope and content of publication
The scope and content of patient group collaboration information published by the Company shall be as follows:
- A Direct funding
Expenses such as contributions, sponsorship fees, regular/supporting membership fees, and advertising expenses - B Indirect funding
Expenses associated with lecture meetings, briefings, training sessions, etc. sponsored or cosponsored by the Company for the purpose of supporting patient groups, etc. (including expenses for outsourcing operations to external contractors) - C Manuscript preparation fees, etc.
Expenses the Company pays to patient groups, etc. in connection with lectures, manuscript preparation, research, advisory services, etc. it requests to the groups, etc. - D Others
Presence or absence of labor provision
- A Direct funding