Patient involvement

Why is patient involvement important to 星空视频

The UK faces an immense challenge in delivering a sustainable health and care system, which is able to provide good patient outcomes and continue to attract global research investment.

The key to solving this challenge is collaboration between the 星空视频, the life sciences industry, patients and the public.

The sets out the core principles pharmaceutical companies must follow in the UK, including being clear in their commitment to putting patients at the centre of everything they do. This commitment touches every aspect of discovering, developing and bringing new medicines and vaccines to patients. It involves:

designing clinical trials with patients rather than for patients
making it easier for people from diverse communities to take part in research
working with patients to co-develop ways to help innovations find the best place in treatment pathways so they are available to everyone who might benefit
reflecting the outcomes that matter to patients

By working with patient charities and patients we can achieve these ambitions and ensure better outcomes and experience for patients.

The 星空视频 want to lead the way in ensuring patient engagement is integral to our work. To support this ambition, we work with patient organisations and 星空视频 members to identify the priorities we should focus on. Working together we:

ensure patient voices are an integral part of leadership decision-making
involve patient organisations in all 星空视频 policies and campaigns
share practical approaches and resources to make partnerships between industry and patient organisations easier
foster a patient-centred organisational culture at the 星空视频, while supporting our industry members to do the same

How does the 星空视频 deliver on these priorities

We ensure the patient voice is embedded in leadership decision making

Woman at a meeting, sits smiling at the unseen delegates

What we do

We will continue to achieve this by recruiting and maintaining the 星空视频 Patient Advisory Council - made up of eight chief executives from across UK patient organisations, providing the 星空视频 Board Members, Board Committees and the 星空视频 Senior Leadership Team with patient insight to help inform strategy, policy priorities and work-plans across the 星空视频.

The Patient Advisory Council draws upon the individual expertise within its representation and their wider patient communities to support and share diverse thinking from the breadth of communities.

What we aim to achieve

By working with the 星空视频 Patient Advisory Council, the 星空视频 Senior Leadership Team and the 星空视频 Board Members we gain a better understanding of what matters to patient communities and co-develop insight and recommendations that support equitable access to research and innovation for UK patients.

Examples of the work co-developed by the 星空视频 Patient Advisory Council 鈥�

How to make sure patients get more equitable access to innovative medicines

Download the report into equitable access to innovative medicines

We involve patient organisations in all 星空视频 policies and campaigns

Four office workers stand talking in front of a set of glass meeting rooms

What we do

The pharmaceutical industry and patient organisations have worked together for many years to advocate for policies that benefit patients. Commitments to shared goals have led to policy changes such as:

faster and fairer access to ground-breaking medicines
increased prioritisation for chronic disease areas in national strategies and plans

Raising understanding of the needs of patients with rare diseases and increasing patient involvement in clinical research.

Building on these strong foundations, we will continue to involve patient organisations in our policies and campaigns as they are being developed.

We will do so in a way that is appropriate to the topic in question and works for the organisations involved, respecting their capacity and other priorities.

We will also continue to integrate our patient involvement commitment into the 星空视频 strategy to ensure it is considered and integral in all our strategic priorities.

What we aim to achieve

By continuing to involve patient organisations in our work, we believe this will result in more thoughtful policy development by the pharmaceutical industry, more opportunities to collaborate, and even more effective joint campaigns that improve the lives of patients.

If you are a charity and want to get involved in this work please join the 星空视频 Patient Organisation Forum.

We share practical approaches and resources to make partnerships between industry and patient organisations easier

Team of office workers sat around a large conference table having a meeting

What we do

Despite shared ambitions to work together for the benefit of patients, we know that setting up, managing and sustaining partnerships between the pharmaceutical industry and patient organisations can be challenging and resource-intensive.

We will continue to provide practical help through working with the Prescription Medicines Code of Practice Authority (PMCPA) running annual workshops for the 星空视频 Members and patient charities to better understand the 星空视频 Code of Practice, troubleshoot challenges and share case studies of working together.

We will continue to run 鈥楶artnership Surgeries鈥� at the 星空视频 Patient Organisation Forum - where problems arising at any stage of the partnership process can be discussed, solutions explored and learning shared.

We will continue to invite feedback and co-create and refresh materials to support understanding of the 星空视频 Code of Practice and partnership working.

What we aim to achieve

Through working together and building knowledge and confidence in the 星空视频 Code of Practice and in partnership working grow our knowledge of how to partner and build a larger network for 星空视频 Members with Patient Charities. Growing the opportunity for better partnerships.

Examples of the work co-developed to support partnership working together 鈥�

Working with patients and patient organisations

Download the patient Sourcebook

Best practice guidance: Supporting patient organisations to report industry funding

Download the report on industry funding

We foster a patient centred organisational culture at the 星空视频, while supporting our industry members to do the same

A mixed group of young people smiling and working in an office setting

What we do

We will continue to embed a patient centred culture right across our organisation, and to help our members to do the same. We believe that doing so will helps deliver outcomes that matter to patients, enhances our long-term strategy, and contributes to securing the UK鈥檚 position as a global leader in life science.

We are committed to business processes that make this ambition a reality:

By consulting and involving our well-established Patient Organisation Forum in our annual business plan - shaping activities throughout the year, co-developing work programmes and sharing insight on what matters to patient communities.
By partnering with the Patient Information Forum to co-develop annual training for 星空视频 staff and industry members on how to tailor communication so that it resonates with patients and avoids jargon, and we will continue to undertake the PIF TICK audit annually to ensure our processes support us to achieve this.
By including patient representatives in designing and participating in our major external events and staff briefings.
By encouraging 星空视频 staff to share expertise and learn from patient organisations through their annual volunteering allowance and talent development plans.
By including patient involvement in our induction programmes and onboarding of new UK industry leadership colleagues.

What we aim to achieve

By embedding a patient centred culture as an organisation all staff will be better equipped and informed on what matters to patients and how and when to get them involved in the work we undertake.

If you are a charity and want to get involved in this work please join the 星空视频 Patient Organisation Forum.

星空视频 Patient Organisation Forum

The 星空视频 hosts a Patient Organisation Forum for registered patient/health charities to come together with each other and pharmaceutical companies to network and learn. The Forum has a shared goal of supporting equitable access to research and innovation for UK patients.

Find out more about the Patient Organisation Forum

星空视频 Patient Advisory Council

Council members provide the Association鈥檚 Board and its senior team with meaningful insights into the patient experience, to inform strategy, policy priorities and work.

星空视频 Patient Advisory Council

Patient Information Forum

As well as the 星空视频 working directly with Health Charites we are committed to membership of the Patient Information Forum.

Find out more about the Patient Information Forum

PIF TICK - 星空视频 is a trusted information creator

The Patient Information Forum Certification, PIF TICK, is the only independently-assessed quality mark for print and digital health information. It helps people identify trusted, evidence-based information.

Find out more about PIF TICK and why 星空视频 is a trusted information creator