Involving Users in Developing Health Information (London) - Thurs 27 June 2019

Involving Users

Ask, don’t assume.  Often when developing health information organisations assume they know their target audience, but without meaningfully involving users at every stage of information development there is no guarantee that the information produced will be relevant, accessible or useful.

Join us in London on Thursday 27 June 2019 for our event on Involving Users in Developing Health Information to find out how you can enhance your user involvement activities.

Attending the event means you will have first sight of our updated Guide to Involving Users and our new website, which we will be launching at the event.

09.30 – 10.00      Registration, refreshments and networking

10.00 – 10.30      Welcome, update and launch of new PIF website             

10.30 – 11.00      Patient perspective
Mike Etkind - Volunteer Panel Member, Healthwatch Bucks

Mike will explore the value of involving patients/carers/public and the benefits of doing so early on, potential sensitivities and elephant traps and the need to support volunteers and value those giving their time.

11.00 – 11.30      Women’s Voices Involvement Panel
Kate Brian - Women’s Voices Lead, Royal College of Obstetricians and Gynaecologists (RCOG)

Kate will discuss women’s involvement in health information at the RCOG. She will explain how the College involves members of the Women’s Network and Women’s Voices Involvement Panel in producing health information at every stage of the process, and will focus on some specific projects to illustrate how this works.

11.30 – 12.00      Refreshment break following the rules of Speeding Networking

12.00 – 12.30      Involving users in the development of health literate decision support resources
Jonathan Berry – Personalisation & Control Specialist; Lead for Health Literacy and Shared Decision Making, NHS England

Jonathan will discuss why NHS England commissioned the development of a health literate decision support framework, why decision support resources are important, why we regard both clinicians and people as “users” in this context, the pilot approach we took in Nottinghamshire, what we learned, why this is important in the context of rolling out Shared Decision Making and what happens next.

12.30 – 1.00        Patients as Partners
Ceinwen Giles - Founding Director, Partnerships & Evaluation at Shine Cancer Support

Ceinwen will be discussing good practice in patient involvement and looking at ways that organisations can work with patients effectively. She'll also discuss earlier international work and how principles of community development can be applied to healthcare work in the UK.

1.00 – 1.45          LUNCH

1.45 – 2.30          Practical session

2.30 – 3.00          Cancer Information Pathway – Involving users across an Integrated Care System to design and
deliver a Cancer Information Signposting Service
Sarah Jane Woods - Dorset Macmillan Cancer Information Project Manager, Dorset Cancer Partnership, Dorset Clinical Commissioning Group

Guided by an Equality Impact Assessment and PIF’s Perfect Patient Information Journey, Sarah Jane will share findings from wide reaching engagement across patient and carer groups, healthcare professionals, equality and diversity groups, voluntary and community sector.

Views were sought on experiences of finding, receiving and understanding health information and this has been used to inform the design of a cancer information service for Dorset and a digital portal to empower healthcare professionals and the public across Wessex, whilst also helping people who are not digitally enabled, find and most importantly understand the information they need.

3.00 – 3.20          Refreshment break

3.20 – 3.50          Working with your target audience
Kaye Stevens – Care Information Manager, Motor Neurone Disease (MND) Association 

An exploration of the possible obstacles to user engagement and why using more than one approach in any project is beneficial. Examples from different information projects will be shared. Have your mobile phones ready for this interactive session!

3.50 – 4.20          Developing user research to enhance our approach to involvement
Chris Begg - User Researcher, NHS 24

Chris will outline NHS 24 in Scotland’s journey to developing a user research function, enhancing their existing approach to user involvement. He will discuss the role of user research in the design process, focussing on needs vs wants.

4.20 – 4.30          Sum up and close

Two speakers at the event will be our PIF Member of the Month for March 2019, Kaye Stevens, and Mike Etkind who wrote a blog for PIF about his user involvement experiences.


Delegate fees for the event are as follows:

  • £160+VAT for PIF members (PIF members should login to the website to see the PIF member rate)
  • £250+VAT for non-PIF members (this includes a complimentary 1-year individual membership to PIF)

You can register to attend the event below.

We hope you can join us!

The PIF Team


Royal College of Anaesthetists, Churchill House, 35 Red Lion Square
Churchill House, 35 Red Lion Square
Map and Directions

Date: 27 June 2019

Start Time: 9:30 am
End Time: 4:30 pm

Price: £300.00

Registration Details

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