PatientView | Kina indsigt fra patientgrupper: En plads ved prisbordet

Patientgruppers mål

Procentdelene nedenfor fremhæver, hvordan de 21 patientgrupper interagerer med regulerende myndigheder og varetager patientinteresser. Da respondenter kan være repræsenteret i mere end ét område, er procentdelene muligvis ikke lig med 100%.

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Engelsk tekst	Terapiområde	Kategori	Patienter nået	Geografisk rækkevidde	Regulatorisk engagement	Respondent
In response to difficulties prescribing anti-tumour drugs after their inclusion in health insurance, and to issues arising from DRG [Diagnosis-Related Group] and disease-based payment policies that lead severely ill patients to undergo staged surgeries or be discharged and readmitted, will raise these concerns with regulators in coordination with the media.	Kræft > Kræft: de fleste typer	Regulatorisk partnerskab > Arbejde med regulerende myndigheder	100.000	National	Sometimes	114998326269
We submit surveys/proposals to CFDA [China Food and Drug Administration] and CDE [Center for Drug Evaluation].	Respiratorisk > Pulmonal hypertension	Regulatorisk partnerskab > Arbejde med regulerende myndigheder	10.000	National	Regularly	115007302730
With respect to newly marketed medicinal products, in our capacity as the initiating body of a patient assistance programme, we gather patient perspectives and, where a therapy demonstrably meets patients' clinical needs and no clinically equivalent alternative is available in China, we advocate for its market authorisation in the country — as we have done for medicines such as secukinumab [biologic medication used to treat autoimmune conditions like plaque psoriasis, psoriatic arthritis, and ankylosing spondylitis] and Nefecon [corticosteroid budesonide used to treat primary Immunoglobulin A nephropathy].	Generelt helbred > Folkesundhed	Regulatorisk partnerskab > Bidrag til ansøgninger om markedsføringstilladelse	100.000	National	Sometimes	115023378250
I have received an invitation from the CDE [药品审评中心 – Center for Drug Evaluation] to participate in a closed-door meeting.	Kræft > Kræft: blod	Regulatorisk partnerskab > Deltag i/faciliter møder med politiske beslutningstagere/regulatorer	100.000	National	Rarely	115007439380
Roundtable discussions are primarily convened by invitation from the NMPA [National Medical Products Administration].	Kræft > Kræft: blod	Regulatorisk partnerskab > Deltag i/faciliter møder med politiske beslutningstagere/regulatorer	100.000	National	Rarely	115008256034
Communicating and raising concerns with the NHSA [国家医疗保障局 – National Healthcare Security Administration/China].	Sjælden > Fabrys sygdom	Regulatorisk partnerskab > Deltag i/faciliter møder med politiske beslutningstagere/regulatorer	1.000	National	Regularly	115013642356
We use questionnaires to gather insights into the patient population and share the resulting survey data at meetings with policymakers.	Kræft > Kræft: de fleste typer	Regulatorisk partnerskab > Deltag i/faciliter møder med politiske beslutningstagere/regulatorer	100.000	National	Sometimes	115033327817
Participating in policy consultations and attending regulatory authority-led seminars that incorporate patient perspectives.	Sjælden > Sjældne sygdomme: de fleste typer	Regulatorisk partnerskab > Deltag i/faciliter møder med politiske beslutningstagere/regulatorer	5.000	National	Rarely	115063429838
Submitting advocacy letters to regulatory authorities.	Sjælden > Sjældne sygdomme: de fleste typer	Indflydelse på politik og lovgivning > Påvirk sundhedspolitik og lovgivning	1.000	National	Regularly	115029711188
Policy advocacy and healthcare access support constitute the core areas of business.	Lever > Hepatitis	Indflydelse på politik og lovgivning > Påvirk sundhedspolitik og lovgivning	100.000	National	Regularly	115050575369
Proposals submitted to the Lianghui [两会 – the annual plenary sessions of China's National People's Congress and the Chinese People's Political Consultative Conference].	Generelt helbred > Folkesundhed	Indflydelse på politik og lovgivning > Deltag i offentlige høringer og konsultationer	100.000	National	Regularly	115023383007
Participating in policy consultations and attending regulatory authority-led seminars that incorporate patient perspectives.	Sjælden > Sjældne sygdomme: de fleste typer	Indflydelse på politik og lovgivning > Deltag i offentlige høringer og konsultationer	5.000	National	Rarely	115063429838
We conduct research — covering areas such as pricing and related matters — and relay the findings to the relevant regulatory authorities.	Kræft > Kræft: de fleste typer	Prisfastsættelse og overkommelighed > Fortaler for retfærdig medicinprissætning	100.000	National	Sometimes	115030437530
Patient-facing media advocacy content relating to healthcare insurance coverage.	Kræft > Kræft: de fleste typer	Prisfastsættelse og overkommelighed > Fortaler for retfærdig medicinprissætning	100.000	National	Sometimes	115032740364
We raise our voice on the issue of drug pricing.	Endokrin > Diabetes: type 2	Prisfastsættelse og overkommelighed > Fortaler for retfærdig medicinprissætning	10.000	Regional	Rarely	115051912364
In our capacity as the initiating organization of a Patient Assistance Program (PAP) for newly approved medicines, we gather and represent patient perspectives. Where a genuine unmet clinical need exists and no clinically viable alternative is available in China, we advocate for the regulatory approval and market authorization of therapies such as secukinumab [biologic medication used to treat autoimmune conditions like plaque psoriasis, psoriatic arthritis, and ankylosing spondylitis] and Nefecon [corticosteroid budesonide used to treat primary Immunoglobulin A nephropathy], while providing evidence on the financial burden borne by patients.	Generelt helbred > Folkesundhed	Prisfastsættelse og overkommelighed > Adresser omkostningsbarrierer for lavindkomst- og sårbare personer	100.000	National	Sometimes	115023378250
In response to difficulties prescribing anti-tumour drugs after their inclusion in the NRDL [ 国家医保药品目录 - China's National Reimbursement Drug List], and to issues arising from DRG [Diagnosis-Related Group] and disease-based payment policies that lead severely ill patients to undergo staged surgeries or be discharged and readmitted, we will raise these concerns with regulators in coordination with the media.	Kræft > Kræft: de fleste typer	Prisfastsættelse og overkommelighed > Sporing og overvågning af lægemiddelpriser/lægemiddelmangler	100.000	National	Sometimes	114998326269
We conduct research — covering areas such as pricing and related matters — and relay the findings to the relevant regulatory authorities.	Kræft > Kræft: de fleste typer	Prisfastsættelse og overkommelighed > Sporing og overvågning af lægemiddelpriser/lægemiddelmangler	100.000	National	Sometimes	115030437530
We advocate for the inclusion of medications within the national medical insurance formulary, as well as for greater ease of access to treatments.	Neurologisk > Multipel sklerose	Prisfastsættelse og overkommelighed > Fortalelse af optagelse af produktet på refusionslister/nationale formularer	10.000	National	Sometimes	115000464773
We advocate for the inclusion of medications within the national medical insurance formulary, as well as for greater ease of access to treatments.	Neurologisk > Multipel sklerose	Prisfastsættelse og overkommelighed > Fortalelse af optagelse af produktet på refusionslister/nationale formularer	10.000	National	Sometimes	115000464773
I will advocate on issues relating to pharmaceutical pricing and the inclusion of pharmaceutical products and medical devices in the national medical insurance (NMI) reimbursement market.	Endokrin > Diabetes: type 2	Prisfastsættelse og overkommelighed > Fortalelse af optagelse af produktet på refusionslister/nationale formularer	10.000	Regional	Rarely	115051912364
Patient-facing media advocacy content relating to healthcare insurance coverage [in China].	Kræft > Kræft: de fleste typer	Forbedring af adgangsveje > Fremme retfærdig adgang til medicin/sundhedspleje	100.000	National	Sometimes	115032740364
For example, patient narratives can be disseminated through media channels to communicate patient needs around medicine accessibility.	Kræft > Kræft: de fleste typer	Forbedring af adgangsveje > Fremme retfærdig adgang til medicin/sundhedspleje	100.000	National	Rarely	115037193619
For example, once a medicine is included in centralised procurement, it becomes unavailable for purchase outside of hospital settings.	Reumatisk > Lupus	Forbedring af adgangsveje > Fremme retfærdig adgang til medicin/sundhedspleje	100.000	National	Sometimes	115046738886
Policy advocacy and healthcare access support constitute the core areas of business.	Lever > Hepatitis	Forbedring af adgangsveje > Fremme retfærdig adgang til medicin/sundhedspleje	100.000	National	Regularly	115050575369
For example, once a medicine is included in centralised procurement, it becomes unavailable for purchase outside of hospital settings.	Reumatisk > Lupus	Forbedring af adgangsveje > Håndter uligheder i adgang og administration	100.000	National	Sometimes	115046738886
Patient needs and concerns should be communicated to policy-making bodies such as the National Healthcare Security Administration [国家医疗保障局 – China's national authority responsible for healthcare security and reimbursement policy].	Hud > Hudtilstande: de fleste typer	Evidensbaseret patientinput > Brug patientindsigt til at informere beslutninger	100.000	National	Sometimes	115007238824
With respect to newly marketed medicinal products, in our capacity as the initiating body of a patient assistance programme, we gather patient perspectives and, where a therapy demonstrably meets patients' clinical needs and no clinically equivalent alternative is available in China, we advocate for its market authorisation in the country — as we have done for medicines such as secukinumab [biologic medication used to treat autoimmune conditions like plaque psoriasis, psoriatic arthritis, and ankylosing spondylitis] and Nefecon [corticosteroid budesonide used to treat primary Immunoglobulin A nephropathy].	Generelt helbred > Folkesundhed	Evidensbaseret patientinput > Brug patientindsigt til at informere beslutninger	100.000	National	Sometimes	115023378250
We use questionnaires to gather insights into the patient population and share the resulting survey data at meetings with policymakers.	Kræft > Kræft: de fleste typer	Evidensbaseret patientinput > Brug patientindsigt til at informere beslutninger	100.000	National	Sometimes	115033327817
For example, patient narratives can be disseminated through media channels to communicate patient needs around medicine accessibility.	Kræft > Kræft: de fleste typer	Evidensbaseret patientinput > Udnyt patienthistorier og fortællinger om levede erfaringer	100.000	National	Rarely	115037193619
We conduct research — covering areas such as pricing and related matters — and relay the findings to the relevant regulatory authorities.	Kræft > Kræft: de fleste typer	Evidensbaseret patientinput > Gennemfør undersøgelser/forskning for at generere data	100.000	National	Sometimes	115030437530
We use questionnaires to gather insights into the patient population and share the resulting survey data at meetings with policymakers.	Kræft > Kræft: de fleste typer	Evidensbaseret patientinput > Gennemfør undersøgelser/forskning for at generere data	100.000	National	Sometimes	115033327817

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Patientgruppers mål

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