The Patient Information Forum was formed in 1997 under the auspices of The King’s Fund. PIF started life as a small group of patient information professionals, who wanted to support each other, share the work they were doing and learn from each other. PIF offered a way of reducing the isolation of their roles, as few organisations had more than one member of staff working to produce and develop health information for their patients. Sadly that is a situation that still exists in many NHS organisations.
In the early days of PIF, members met together, held small workshops and networking events and shared their expertise. Members took on voluntary roles as part of a governing Steering Group, giving their time to help the organisation grow and develop and offer more services to the widening membership.
By 2005 PIF’s membership was growing fast, reflecting the rise in the importance of health information in more patient centred services and in health policy. In 2005, PIF held its first UK annual conference and put on a number of workshops on topics such as information for screening and setting up an information centre. Conferences in Wales and Scotland were also held.
Change of governance
Around this time PIF changed its governance structure, moving towards a smaller management group and soon after taking on the first paid staff – an administrator to manage membership subscriptions and services. Governance changed again in 2009 with the formation of a Strategy Group to oversee the development of the organisation in the future, and an Advisory Group to make sure the needs and views of members were fed into and reflected in the services offered. PIF moved from an unincorporated association to a company limited by guarantee in 2007.
In 2013, a Task and Finish Group reviewed PIF’s governance and recommended the election of a Board of Non-Executive Directors and disbanding of the Strategy Group. The Board sets the strategy for PIF to achieve its vision, mission and aims as well as ensuring proper governance. It also oversees the development and implementation of the business plan and plays a fundamental role in the effective running and growth of the organisation. In 2014, the network of Regional and Country Co-ordinators was absorbed into the Advisory Group.
PIF membership has grown and broadened in the years since its formation. There are now over 600+ members from across all sectors, representing every kind of information producer and provider, from very large international companies to small health charities, from national health departments to researchers and freelancers. Services for members have also developed; topic-focused events bring together members and non-members, the PIF Query service offers individual answers to the challenges of providing health information and the voice of producers is being heard through work to influence national health policy.
PIF continues to grow and develop, and plays an important role in the development of future work on health literacy, shared decision making, patient experience and reducing health inequalities through raising standards and improving access to health information for all.