[vc_row][vc_column][vc_column_text]Statement released: May 12, 2020 by The Irish Platform for Patient Organisations
As the COVID-19 pandemic continues to unfold, IPPOSI are keen to ensure that the patient perspective is understood alongside broader public health considerations. To this end, our network of members, which includes 100+ patient organisation members (as well as many other individual patients), stands ready to provide support to Ireland’s health system in any way we can during this difficult time.
We have over a decade of experience in facilitating multi-stakeholder dialogue in response to a range of health challenges (access to medicines, e-health, patient involvement, clinical research). We regularly convene around one table as patients, academics, scientists, clinical researchers, pharmaceutical representatives, and healthcare professionals to identify areas of consensus and to propose solution-oriented responses.
We offer the knowledge, experience and breadth of this network as we continue to advocate for patients to be:
- involved in the preparation of new policy documents, new research proposals, new innovative tools and treatments.
- recognised as key partners in the design, delivery and evaluation of digital health solutions from the earliest possible stage.
- informed and updated around the supply chain for existing medicines; and reassured that the process of assessing and reimbursing new medicines continues.
Strengthening our mutual commitment to patient-centricity and patient involvement
We understand that many decisions now need to be taken within an extremely short timeframe, however we underline that expediency should not trump the quality and/or representativeness of these decisions. Patients need to be involved in the preparation of new policy documents, new research proposals, new innovative tools and treatments. Involvement (particularly early involvement) can ensure that all perspectives inform the direction of travel and that key decisions and initiatives are informed by people’s ‘lived experience’. It is likely that this involvement can build confidence in both the process and the decision. We acknowledge that there may be instances where it is not possible to directly involve patients, and on these occasions, decisions must be consistent with agreed, existing national policy or clinical guidance (documents which hopefully benefitted from patient involvement during development).
**Currently, the NIHR (UK) has demonstrated best practice in this field by renewing its commitment to patient involvement, participation and engagement during the COVID-19 pandemic and by publishing eight new commitments to inform its approach during this period on 16 April 2020.
Investing in our health future by developing patient-driven digital solutions
We recognise that health systems are currently working hard to put in place digital solutions to address health sector challenges during a period of prolonged social distancing. We believe that to maximise the opportunities which digital health affords us, and to minimise the risks, patients need to be recognised as key partners in the design, delivery and evaluation of digital health solutions from the earliest possible stage. Decisions around how data is collected, stored, managed, used and shared must be informed by patient perspectives. We welcome the invitation from the National Children’s Hospital to incorporate patients and families in the process of procuring Ireland’s first national electronic health record. We understand that there are many other e-health projects already under implementation or in pilot phases, and we ask that patients be extensively involved in their evaluation and/or their modification for future large-scale roll out.
**The Data Guardian (UK) is organising a series of ‘Public Dialogue’ workshops throughout 2020 to support and develop guidance for data controllers (including health and social care providers) around how to carry out public benefit assessments when deciding on whether data should be used for purposes beyond individual care. The project oversight group includes patients.
Guaranteeing our medicines supply and approving the use of new (non-COVID) medicines
We know that governments around the world are under pressure to secure the supply of existing medicines (especially those touted as potential COVID-19 treatments) and that national resources have been redirected to the fight against COVID-19. However, we ask that both these efforts are balanced against the needs of the chronic and/or rare disease communities who rely on existing medicines and new medicines to improve their short- or long-term health outcomes.
Firstly, patients need to be informed and updated around the supply chain for existing medicines. Working together, we believe government, industry and patient leaders can get ahead of the media curve and provide reliable patient-tailored information directly to affected individuals and families, thereby reducing undue stress and stockpiling. We welcome the important work already done by the HPRA[1], the government and industry in this space.
Secondly, patients need to be reassured that the process of assessing and reimbursing new medicines continues. Accepting that we may be living with COVID-19 for some time, we must, at all costs, avoid the perception of a hierarchy of health needs. Patients need to be able to manage their existing conditions, and new medicines offering potentially life-saving or life-improving outcomes need to be reviewed for their clinical (and cost) effectiveness and made available for use. This is especially pertinent for immunosuppressed patients as new treatments may offer the potential to reduce their risk of complications as a result of underlying condition(s) were they to contract COVID-19. In line with our Patient Charter published in February 2019, we believe that strengthening patient involvement across the medicines assessment and reimbursement process will help bring these important issues to light.
**NICE (UK) has dedicated a section to keep the public updated on the progress of its assessment of new medicines. It shares a list of treatments which have been prioritised for assessment, including all new cancer medicines.
**IMPORTANT TO NOTE: All examples shared above have been taken from the UK. Unquestionably many of our European Member States are also working hard to involve patients in different aspects of the health sector during this difficult time, however the details of these efforts many not yet have been shared widely for English-speaking audiences.
This position is supported by IPPOSI patient, science and industry representatives. It has been reviewed and endorsed by:
The IPPOSI Board: representatives from patient, science and industry elected to provide strategic advice and governance
- Ava Battles (Chair), MS Ireland
- Neil Johnson, CROI
- David McMahon, Irish Skin Foundation
- Sarah O’Connor, Asthma Society Ireland
- Anne-Marie O’Dowd, Cystinosis Ireland
- Grainne O’Leary, Arthritis Ireland
- Julie Power, Vasculitis Ireland Awareness
- Kevin Whelan, Fighting Blindness
- Orla Hardiman, Trinity College Dublin
- Anne-Marie Healy, Trinity College Dublin
- Louise Hopper, Dublin City University
- Jason Last, University College Dublin
- Jean Saunders, University of Limerick and CSCS consulting
- Gaye Stephens, Trinity College Dublin
- Nuala Carey Abbvie
- Eleanor Hannon, Biomarin
- Conchuir MacGlionn, Roche
- Susanne O’Reilly, Novartis
- Brid Seoighe, Janssen
The IPPOSI Policy Advisory Committee: representatives from patient, science and industry selected for their expertise in health policy.
- Tomás Carroll, Alpha-1 Foundation
- John Dowling, Men Against Cancer
- Aoife Kirwan, MS Ireland
- Rachel Morrogh, Irish Cancer Society
- John McCormack, Policy Advisory Committee member
- Julie Power, Vasculitis Ireland Awareness
- Gaye Stephens, Trinity College Dublin
- Gianpiero Cavalleri, RCSI
- Jon Salsberg, University of Limerick
- Clare Harney, IMSTA
- Carmel Mulroy, Bayer
- Fred Doherty, Sanofi
- Paula Guerin, independent consultant (industry representative)
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