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Trusted information in unprecedented times: Two years of learning from the PIF TICK quality mark for health information - Dan Wills & Sophie Randall

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Trusted information in unprecedented times
Two years of learning from the PIF TICK quality mark for
health information
Dan...

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“Everyone has access to
personalised health information to
enable them to make informed
decisions about their health,
well...

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Information quality and trust
Introducing a new quality mark

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Trusted information in unprecedented times: Two years of learning from the PIF TICK quality mark for health information - Dan Wills & Sophie Randall

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Presented at LILAC 2022

Presented at LILAC 2022

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Trusted information in unprecedented times: Two years of learning from the PIF TICK quality mark for health information - Dan Wills & Sophie Randall

  1. 1. Trusted information in unprecedented times Two years of learning from the PIF TICK quality mark for health information Dan Wills, Information Quality Mark Manager Sophie Randall, Director Patient Information Forum
  2. 2. “Everyone has access to personalised health information to enable them to make informed decisions about their health, wellbeing and care.” Our vision
  3. 3. Information quality and trust Introducing a new quality mark
  4. 4. PIF TICK was piloted with national health organisations
  5. 5. PIF TICK 10 point criteria
  6. 6. The PIF TICK annual assessment cycle
  7. 7. Why it matters for organisations Pilot evaluation found: ● 100% felt the scheme helped maintain or improve internal processes and procedures ● 90% made changes to their internal processes following assessment ● 100% would recommend the scheme to other organisations ● 100% described the assessment as informative ● 90% described the assessment as both robust and supportive ‘We now have an improved and robust method for producing patient information on anaesthesia.’ Elena Fabbrani, Royal College of Anaesthetists
  8. 8. The general public and trust Consumer research found: ● 80% of the public would look for a quality mark on health information. ● Evidence, plain English and trained staff were the top three criteria that mattered to the public. After a successful pilot we opened to members in April 2020. Just as the pandemic started…
  9. 9. The pandemic, information quality and trust
  10. 10. Searching for trusted information on COVID-19 The Covid-19 pandemic created a surge in online information, misinformation and disinformation and the public turned to the internet for health information as never before. [1–3] In March 2020 the NHS website recorded 120m visits, the highest ever. [4] YouTube hosts more than 3,000 videos on Covid and/or vaccines with over 1.7 billion views. [5] Between these platforms sit a host of information providers. Many were members of the NHS England Information Standard. This was discontinued in 2019 as a ‘kitemarked’ scheme. [6]
  11. 11. Health literacy and misinformation Research suggests people with lower health literacy are more susceptible to misinformation and disinformation. [7] Lack of access to trusted information was a key factor in driving concern about Covid-19, leading to up to 1 in 3 people avoiding healthcare settings during the pandemic. [8]
  12. 12. Covid choices and trusted information • 25% have plenty of trustworthy info • 53% have just enough to make decisions • 17% don’t have enough information • 5% are overwhelmed with information and can’t make a decision. BUT there were 187 free text comments, almost all negative. ‘Not having enough information has caused me to be over cautious and shield. I don’t trust the government as I believe their priority is the economy not public health.’ ‘I find the government’s information, which I would normally expect to be trustworthy, to be inconsistent. I tend to rely on NRAS, local GP and WHO.’
  13. 13. Trusted sources and conflicting information Trust ● NHS was most trusted by respondents followed by WHO ● UK government listed by 45% Making decisions ● 68% prefer to follow trusted guidance ● 32% make decisions based on their own research and network (potential for misinformation and disinformation) Conflicting ● Only 7% of people felt information was consistent. ● 52% found it very conflicting. It was ranked equally difficult as finding trustworthy information. ‘The government told me to shield, the transplant coordinators told me I could carry on working. My GP told me to do what I want.’ Covid Choices survey respondent
  14. 14. Maternity decisions – where do women get information? PIF survey of 2,300 women August 2021 NHS is top source, search online, family and friends are next most trusted. BUT Women reported having insufficient information to make decisions from NHS sources.
  15. 15. BMI - who do you trust? Good Housekeeping ● BMI is the best clinical indicator of surgical risk ● Patients surprised when they are declined based on BMI ● BMA Patient Information Award winner ● RCoA is a PIF TICK accredited organisation Royal College of Anaesthetists
  16. 16. Edelman Trust Barometer 2022 Survey of 10,000 people in 10 countries in February this year. [9] Findings 50% consume health information regularly. Trust a key determinant of health, central to both individual and public healthcare decisions. Post-pandemic less trust in the healthcare system, inequitable access to quality information and medical science politicised. Recommendations Breaking through the information barrier – elevate and amplify expert and local voices. Building trust across the full health ecosystem – when trust in government lags, other institutions must play a larger role.
  17. 17. In this environment, PIF TICK can help 62 certified organisations, more than 100 in the scheme
  18. 18. Directing service users to the PIF TICK The PIF TICK website provides a gateway to certified organisations and aims to promote wider media and information literacy. These skills are required to distinguish between trusted and non-trustworthy health information. [10-14] ‘Having a PIF TICK quality mark would increase my confidence in the information I’m using.’ PIF TICK Top tips and guides Patient advocate
  19. 19. Pandemic has been a teachable moment Pandemic has raised the topic of media and information literacy It has shown the misinformation and disinformation can be deadly Still hard for people to know what to trust Demonstrated the need for reliable trusted information which people can easily use, understand and share During this time the PIF TICK has grown Now is the time to raise awareness
  20. 20. Working together with partners WHO funded PhD candidate concluded PIF TICK is the most thorough and robust assessed ‘green mark’. The HealthiNote information prescription platform, linked to e- consult, and HCI Video use the PIF TICK to to verify the information they signpost via their NHS facing platforms. We are working with NHSE and YouTube to support new initiatives to signpost trusted information. PIF is a member of the board of the Media and Information Literacy Alliance working with other organisations to promote this topic.
  21. 21. How can we raise awareness of the scheme? We want to work with all organisations interested in media and information literacy to raise awareness of the PIF TICK and signpost the public to trusted information. How can we raise awareness with: 1. Healthcare professionals 2. Patients and the public How can we harness communities of practice in media and information literacy?
  22. 22. References 1. World Health Organization. Infodemic management: an overview of infodemic management during Covid-19, January 2020 – May 2021. Licence: CC BY-NC-SA 3.0 IGO. https://www.who.int/publications/i/item/9789240035966 2. Worrall AP, Connolly MJ, O'Neill A, et al. Readability of online COVID- 19 health information: a comparison between four English speaking countries. BMC Public Health. 2020;20(1):1635. doi: 10.1186/s12889-020- 09710-5. PMID: 33183297; PMCID: PMC7661100. https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-020- 09710-5 3. Chan C, Daniels E, Normahani P, et al. The reliability and quality of YouTube videos as a source of public health information regarding COVID-19 vaccination: Cross-sectional study. JMIR public health and surveillance. 2021;7(7):e29942. Available from: https://publichealth.jmir.org/2021/7/e29942/ 4. NHS Digital, Surge in people using NHS tech in 2020 https://digital.nhs.uk/news/2020/surge-in-people-using-nhs-tech-2020 5. Coghlin L. Judging the quality of YouTube videos on Covid-19 – lessons learnt. 3 November 2021. Patient Information Forum Blogs. https://pifonline.org.uk/blogs/judging-the-quality-of-youtube-videos-on- covid-19-lessons-learnt/ 6. NHS England. About the Information Standard. https://www.england.nhs.uk/tis/about/ 7. I Montagni, K Ouazzani-Touhami, A Mebarki, et al, the CONFINS group, Acceptance of a Covid-19 vaccine is associated with ability to detect fake news and health literacy, Journal of Public Health, 2021;, fdab028, https://doi.org/10.1093/pubmed/fdab028 8. PIF, Covid Choices Survey Results https://pifonline.org.uk/resources/covid-19-resources-hub/covid-choices- survey/ 9. Edelman 2022 Trust Barometer, Special report: Trust and Health https://www.edelman.com/sites/g/files/aatuss191/files/2022- 03/2022%20Trust%20Barometer%20Special%20Report%20Trust%20and%20Heal th_Mar10.pdf 10. Dadaczynski K, Okan O, Messer M, et al. Digital health literacy and web-based information-seeking behaviors of university students in Germany during the COVID- 19 pandemic: Cross-sectional survey study. J Med Internet Res. 2021;23(1):e24097. doi: 10.2196/24097. PMID: 33395396; PMCID: PMC7813561. https://pubmed.ncbi.nlm.nih.gov/33395396/ 11. The HLS19 Consortium of the WHO Action Network M-POHL. International report on the methodology, results, and recommendations of the European Health Literacy Population Survey 2019-2021 (HLS19) of M-POHL. December 2021. https://m-pohl.net/node/42 12. Iorio E. Infosphere: The influence of disinformation. Clinical Chemistry and Laboratory Medicine (2020): AA10-AA11. https://pesquisa.bvsalud.org/global- literature-on-novel-coronavirus-2019-ncov/resource/pt/covidwho-992743 13. Haider J, Sundin O. Information literacy challenges in digital culture: conflicting engagements of trust and doubt. Information, communication & Society 2020; DOI:10.1080/1369118X.2020.1851389 https://doi.org/10.1080/1369118X.2020.1851389 14. De Gani SM, Berger FMP, Guggiari E, Jaks R. Relation of corona-specific health literacy to use of and trust in information sources during the COVID-19 pandemic. BMC Public Health. 2022;22(1):42. doi: 10.1186/s12889-021-12271-w. PMID: 34991525; PMCID: PMC8735736. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8735736/
  23. 23. Sophie Randall Director Patient Information Forum Email: sophie.randall@pifonline.org.uk Twitter: @PIFonline Dan Wills Quality Mark Manager Patient Information Forum Email: dan.wills@pifonline.org.uk Telephone: 07368 473199 Twitter: @PIFonline

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