Empowering Patients with Information Technology

Patient Information Forum


By the end of this session, participants will have a greater awareness of:

  • their own knowledge and interactions with health information
  • the importance of health literacy and accessible information
  • good quality health information resources
  • resources and techniques to help assess the quality health information
  • supporting material and organisations

What is the Patient Information Forum?

  • The Patient Information Forum (PIF) is the ‘go to’ UK membership organisation and network for people working in, and involved with, healthcare information and support. We are not-for-profit and independent.
  • We have a network of over 600+ members, representing every kind of information and support producer and provider, including the NHS, voluntary, commercial, academic and freelance sectors.
  • 89% of respondents in the 2017 PIF membership survey said they strongly agreed or agreed that they would recommend PIF membership to a friend.

What does PIF do?

  • We provide support to individuals and organisations to help them provide the best health information for patients.
  • We deliver practical resources to increase expertise for all those who share our vision, including delivering events, online discussion groups and a weekly e-newsletter.
  • We influence to ensure improving the quality of health information is high up on the agenda across the whole NHS and health sector
  • We work on projects, with patients and clinicians, to map their perfect patient information journey
  • We provide a best practice toolkit and updates to support the creation of high quality health information.
  • We highlight research and reports on key health information topics.

Producing Health Information for Children

The information PIF sends out is wonderful and it lets me know that I am not alone and I get fantastic insights on what others are doing in the same areas of communication and engagement. Then it’s a case of not re-inventing the wheel. If anyone’s looking for help and information and education, this is a great organisation.

Perfect Patient Information Journey

Why do we do it? 

  • We believe high quality health information is the cornerstone of achieving the best experience for patients, and putting them in control of their well-being, treatment and care.
  • We know that getting health information right is good for the patient and good for the NHS. It improves patients’ outcomes and saves the NHS money.

Our 2013 report, Making the case for information, outlined tangible benefits of investing in high quality patient information, including reduced GP demand.

Is knowledge power?

Patient views on the information they were given

  • 36% felt they were not given helpful information at first diagnosis
  • 32% find it difficult to access trustworthy information on their condition
  • 20% felt they did not have enough information to feel confident in discussing decisions about their treatment with their doctor

I wasn't a typical case

I wasnt given enough information to make a choice

I ask a lot of questions

Providers of online health information need to be aware of the searching behaviour of patients and their carers. Access, or lack of, to online health information and the literacy to be able to understand it, is causing a disparity in health outcomes.

  • Access to the Internet
    • UK has highest proportion of households with Internet access (82%)
  • Searching behaviour
    • More likely to search if they have chronic conditions
    • Disparity due to poverty and lack of Internet access
    • Knowledge of clinical terminology
  • Quality of online health information
    • Incorrect information leads to poor decisions
    • No requirement to adhere to quality standard
  • Shared decision-making
    • Involved patients are more likely to be compliant

Accessible Information Standard

  • From 1st August 2016, all organisations that provide NHS care and / or publicly-funded adult social care are legally required to follow the Accessible Information Standard.
  • The Standard sets out a specific, consistent approach to identifying, recording, flagging, sharing and meeting the information and communication support needs of patients, service users, carers and parents with a disability, impairment or sensory loss.

Quality tools

The Information Standard Information Standard

Kitemark launched in 2009 – Now owned by NHS England

Six aspects of producing good quality information

  1. Information production process
  2. Evidence sources
  3. User understanding and involvement
  4. End product
  5. Feedback
  6. Review

discern online  – Assessing quality

  • Checklist of 16 questions
  • Authorship – Who wrote the content and what are their credentials? Are they qualified to provide this information?
  • Attribution – is it clear how the information was generated, e.g. is it referenced?
  • Disclosure – is the web-site sponsored by anyone who might have a commercial gain? When did they write it? Who did they write it for?
  • Currency – is there a date to indicate age of the content?

Consumer health information sources

PIF resources

PIF supports members with a range of events, a weekly e-newsletter which rounds up health information news, and resources including:

  • PIF website and Toolkit – which includes resources on communicating risk
  • Accessible Information Group – established to support people involved in implementing the new mandatory NHS England Accessible Information Standard (AIS)
  • Events – Shared Decision Making, Digital Health Information, Communicating Risk

Presented at our conference Empowering Patients with Information Technology