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.
“Everyone has access to
personalised health information to
enable them to make informed
decisions about their health,
wellbeing and care.”
Our vision

3.
Information quality and trust
Introducing a new quality mark

4.
PIF TICK was piloted with national health organisations

5.
PIF TICK 10 point criteria

6.
The PIF TICK annual assessment cycle

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.
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.
The pandemic, information
quality and trust

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.
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.
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.
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.
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.
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.
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.
In this environment, PIF TICK can help
62 certified organisations, more than 100 in the scheme

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.
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.
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.
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.
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.
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