The Patient Information Forum (PIF) is the UK membership organisation and network for people working in, and involved with, healthcare information and support.
PIF is an independent, not-for-profit organisation, and together with our members, we believe that high quality healthcare information and support should be available to everyone. Healthcare information isn’t just about leaflets and printed information. It’s much broader than that; it can be hospital signage, appointment letters, websites, informed consent, personal health records, patient education programmes, social media, the list goes on. Good information and support engages people in their well-being, improves their experience and enables them and their families or carers to make choices about their lifestyle, treatment and the services they use.
PIF was established in 1997 by a team of patient information managers, when there was little or no support for them in their respective organisations. Our work has evolved in response to the increasing importance of health information, and changes in health policy and practice. However, even today, patient information professionals can often find themselves isolated, or working alone within their organisation. Read more about Our History here.
The PIF membership body is now over 600+ strong, and members come from across all sectors, representing every kind of information and support producer and provider, from the NHS to large international companies, health charities to national health departments, researchers to freelance medical writers. The very breadth of our membership is what makes us an unique. Find out more about Membership here.
According to research by Public Health England, health information is too complex for the literacy capability of 43% of people and the numeracy capability of 61% of people. This can leave millions of people excluded from making informed decisions about their health.
PIF believes in the importance of information as a therapy in its own right, providing the foundation of patient-centred care, shared decision-making and self-management.
Recognising that access to high-quality health information and support is crucial to improving patient outcomes and unlocking what has been termed the ‘blockbuster drug’ of patient engagement, PIF has produced a number of reports and other resources aimed at examining the evidence, promoting its importance and providing guidance on content. These include:
- In June 2018, the Patient Information Forum (PIF) published the final report of a project which explored how healthcare services can develop a Perfect Patient Information Journey.
- The PIF Toolkit, which brings together best practice guidance on ‘Creating health information that works’, a resource released in January 2016, as well as a range of good practice case studies.
- ‘Is Knowledge Power? Using information and support to empower patients’, a report released in March 2015 to examine progress and prospects for empowering patients through information, central to current NHS policy.
- ‘Making the Case for Information’, a report released in May 2013 bringing together the evidence for investing in high quality information for patients and the public.
You can find out more about our activities by reading our blog post sharing a summary of our activities and impact in 2017.
Everyone has access to high-quality healthcare information and support to enable them to make informed decisions about their health, wellbeing and care.
The Patient Information Forum is committed to improving the healthcare experience of patients and the public. We do this by supporting individuals and organisations to provide high-quality, clearly communicated, evidence-based healthcare information, which is accessible and developed with its users, so that everyone can understand their care, and make informed decisions about their health and wellbeing choices.
Information is much more than just a leaflet. It is a therapy in its own right, and provides the foundation of patient education, person-centred care, shared decision making and self-management.
Access to quality, accurate, evidence-based healthcare information provides a robust platform from which patients and healthcare professionals can engage in a shared partnership to improve health outcomes.
QUALITY- We raise standards and highlight good practice in the production and provision of healthcare information and support
INTEGRATION – We campaign for high-quality healthcare information and support to be an integral part of the patient journey
EXPERTISE – We champion and enhance the expertise of people working in the field of healthcare information and support
IMPACT – We promote the need to evaluate the impact of high-quality healthcare information and support
INFRASTRUCTURE – We strive to develop and maintain a sustainable, expanding and financially secure organisation
How are we funded?
PIF is a not-for-profit organisation. We are funded by membership subscriptions, income from events, and by sponsorship for specific projects.
Upon payment of our running costs any profit generated is re-invested in the services that PIF provides to its members, and the wider health information and support sector.
We rely both on the support of our members, and on the relationships we build with like-minded organisations, to develop our services and widen our influence.
Our definition of information and support
The following definition of healthcare information and support was drawn up from stakeholder feedback, and further discussion at a focus group held in May 2015.
What is healthcare information?
Healthcare information (content) is a factual tool. When it is of high-quality, unbiased, accurate, clearly communicated, evidence based and developed with users it increases a person’s knowledge and understanding about their health, wellbeing, treatment and care. Information is the foundation upon which people can engage in and make informed decisions about their health and care.
The channels and mediums for the delivery of healthcare information can vary and include:
Channels of information
• Printed leaflets or booklets
• Digital media (including websites, apps, DVDs)
• Patient education programmes
• Decision aids
• Social media
• Informed consent
• Personal health records
• Medical data
• Appointment letters
• Patient engagement materials e.g surveys, invitations and briefings
• Anything that contains advice, statistics and recommendations
• Verbal factual information given during an appointment with a health professional
Healthcare information has a role to play in person-centred care, shared-decision making, patient empowerment, self-management and many other patient engagement strategies.
What is support?
Support ensures that healthcare information is understood in the context of an individual’s specific situation and life (personalisation). Support empowers people to use information to make decisions about, and play an active role, in their health and care.
Support takes into account the emotional impact of health and wellbeing. It is a continuous process and happens throughout a person’s care. Support provides an opportunity to signpost a person to further information or services that are relevant to their situation.
Support to understand healthcare information can be provided through a wide range of interactions including consultations with healthcare professionals, advice services, peer to peer contact and education courses.
What do our members think?
I have been a member of PIF right from its beginning and have always found it genuinely useful and supportive to have contacts with others involved in producing patient information. It’s good to know that the organisation is continually taking forward the ‘patient information agenda’ at a national level.
Margaret Watson, Patient Information Manager, The Christie NHS Foundation Trust