Patient Information Forum Annual Report 1. Introduction The Patient Information Forum is the UK organisation for people who work in consumer health information. It was founded in 1997 19 from a desire to see an improvement in the quality and availability of health information for patients and the public. Since tthen, hen, PiF has also grown from a small voluntary network to a significant membership organisation. In essence PiF can now be seen as the professional body for people who work in the fiel field d of consumer health information. 2. Review of 2011 / 2012 2.1
Objectives for April 2011/April 2012
PiF set itself a number of objectives for 2011/12 and made the following progress towards achieving them: Objective 1. To develop and improve the services offered to our members
PIF Annual report 2012
Specific targets for 2011/12 • To create and publish a series of 10-15 10 PiF ‘quick guides’ to consumer health information topics and publish these on the members members-only section of the website • To strengthen the programme of regional events, with one event offered during the course of the year in each region • To hold a profitable and engaging annual UK conference (April 2012) and an inaugural Scotland conference (October 2011) • To create an online directory of suppliers within the PiF website • To create and moderate sector-specific sector discussion areas within the PiF e-community e • To work with NHS Elect to create a package of consultancy for NHS Trusts, to pilot this with two members of NHS Elect and publish a toolkit for PiF members based on the results. • To develop and publish a Directory of Information Centres • To amalgamate resources from the Ask About
Achievements • Seven quick guides published with several others in development • There were regional events in the East Midlands, South West and London. • PiF annual conference 2011 and PiF Scotland Conference 2011 were both successful and profitable. • Information Centres Directory created, to be published with new website • Ask About Medicines information hosted on the PiF website and promoted when requested. requested • Template NHS policies es and other documents published and hosted on the PiF website. Not achieved • Directory of suppliers • Sector specific discussion areas (however, specialist groups and regional groups coming with new website Dec 2012) • NHS Elect work – change in capacity to deliver at NHS Elect
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Medicines project and promote these. To publish a collection of templates, guidelines and policies for the NHS sector based on members’ contributions. To publish the Case for Information
2. To build and create a robust evidence base for the benefits of consumer health information* 3. To set standards on the production of high quality consumer health information*
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To publish three new PiF guides: • o Health Literacy and Consumer Health Information o Producing High Quality Information: the definitive step by step guide • o Co-developing and User Testing Information with Users •
4. To continue to develop PiF working practices to create a strong, financially sound and effective organisation
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To undertake a strategic review of PiF’s long term strategy and core objectives, including governance structures. To continue to develop PiF’s internal policies and processes to enable PiF to meet the requirements of external funders, while maintaining PiF’s strength as a flexible, non-bureaucratic organisation. To maintain the new system of quarterly performance reporting to the Strategy Group, and complete the 2010/11 annual accounts in time for the September 2011 AGM. To fill the vacancy on the strategy group for a member with an interest in finance To develop formal links with other organisations (such as National Voices and the Information Standard) for co-promotion
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• 5. To raise the profile of PiF by maximising opportunities to promote the organisation
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• 6. To raise the profile of consumer health information by taking PIF Annual report 2012
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To hold at least 3 executive circle events during 2011/12
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Work underway as part of the Department of Health funded work. Applied for funding to MSD for Health Literacy guide and were unsuccessful (however MSD are funding other health literacy work). Funding bids will start again for this work next year. Guide to Producing High Quality Information to be developed in 2013 as part of DH grant. Produced guide to Health Records Access with support from Microsoft (launched June 2012) Strategy and core objectives reviewed using external consultant. Governance structures to be reviewed before April 2013. Strategy Group met quarterly, end of year accounts submitted on time. Unsuccessful at filling vacancy on Strategy group for someone with finance expertise.
Working closely with National Voices (and Macmillan) to contribute to the Future Forum report on information, including the ideal patient information journey and a workshop at the National Voices conference. Mark Duman part of Engagement Board for Information Standard. One executive circle event held with Sir John Oldham, June 2013. Second event arranged with Cabinet Office which was 2 of 4
advantage of opportunities to influence policy and engage with decision makers
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7. To develop long term secure funding streams and generate income
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To continue to meet with policy makers at the DH and to hold positions of influence on policy related groups (such as the PROMS stakeholder reference groups) To secure new and renewed partner and supporter membership agreements To execute a recruitment plan to grow the number of individual and organisation members, targeting 100 new organisational members, but budgeting conservatively on the basis that 30 will be achieved. To make significant funding applications to Lottery Funds, the DH and another charitable funding organisation to secure core funding for the organisation To explore potential for merging with another organisation to reduce fixed costs.
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cancelled by them. Numerous speaking engagements (on average 2 per month) and cross promoting via conferences
Secured two new partner members, Leo Pharma and Boehringer Ingleheim, plus new supporters UCB pharma and Lloyds Pharmacy. Maintained partner/supporter membership with Bupa, MSD, Macmillan and Microsoft. NHS Direct did not renew (change in their circumstances cited) Successful application to Department of Health Voluntary sector investment fund for 3 years funding 2012-15 (£175,000) Secured £20k funds from Microsoft for Guide to Health Records Access Ran a short pilot campaign with an external agency to recruit NHS acute Trusts into the membership. Unsuccessful and therefore this type of approach dropped.
In addition: • Short film about the benefits for health information made with Boehringer Ingleheim and ITN, and shown at the NHS Alliance Conference • Completed the second part of a review of the BMA Patient Information Awards with the BMA • PiF started Tweeting and created a LinkedIn page • Introduced the Proud to be a PiF member logo • Introduced Paypal as a payment option this year • Significant expansion and improvement in the regional network with new coordinators, increased reach and profile 2.2 Objectives for April 2012/April 2013 Objective
Aims
Workplan
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To provide relevant and appropriate quality assurance and benchmarking tools for information
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Promote and develop quality standards and best practice
To provide relevant training which provides a benchmark of quality for information producers
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Update PiF guides to Appraising Health Information and Producing Health information for Children and Young People Publish guide to records access Develop and launch PiF ‘sounding board’ for peer review of information resources and services
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To produce appropriate materials about information service development and quality assurance for NHS organisations 2.
Champion the ‘case for information’ – the evidence of benefit
To bring together and document the benefits of providing high quality CHI and the gaps in evidence and areas where more work is needed
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To ensure the development of information as an essential service
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Influence commissioning and NHS pathways/processes
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Influence health policy and NHS pathways/ processes across all UK nations – support Country Co-ordinators to develop links with their counterpart in UK wide charities (e.g. Macmillan, Stroke, Arthritis) Undertake survey about understanding of health literacy and services provided in this area, with information producers, publish and publicise the results Redevelop and launch PiF website Develop specialist groups, mentor service, query service, and networking online Annual UK wide conference – 2 May 2013 Two workshop events and 3 regional events Three executive circle events Recruit events manager and service development manager roles Support and develop regional coordinator network
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Conduct research with information producers and providers
To understand and map the UK CHI workforce
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Encourage and share best practice
Create effective and accessible mechanisms to enable sharing of good practice, resources, skills and knowledge among the membership
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Strengthen governance and executive functions
To establish clear lines of responsibility and accountability To decide legal status, meet legal and financial obligations
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• • To develop organisational structure and roles and responsibilities which enable PiF to meet its objectives for the • PIF Annual report 2012
Tender for, and commission, organisation to undertake research and review and produce case for information report Publish, promote and widely disseminate the case for information report and guidance for commissioners, policy makers and managers Evaluate the impact and reach of the Case for Information Work with stakeholders, partner organisations, the NHS Commissioning Board and the DH to influence commissioning and understand the commissioning environment Increase depth and breadth of the PiF membership body to strengthen our voice Undertake a scoping piece of work to understand the components of good information and services from the information provider perspective and to recommend the levers, incentives and possible solutions for improving quality and access to information.
Undertake time limited governance review – task and finish group and implement recommendations. Review role descriptions for current staff Establish regular reporting mechanisms Evaluate the work of the organisation and its impact 4 of 4
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Increase size and breadth of membership body
future Increase the influence and scope of the organisation with policy makers, Government and commissioners. Generate unrestricted income Increase the knowledge, skills and expertise base of the membership body
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PIF Annual report 2012
Undertake a review of membership benefits and fees, using interviews and online survey. Make recommendations Implement new membership fees and benefits Develop a marketing and membership strategy and implement it. Nurture and recruit PiF Partners/ Friends
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