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Rare patient passport trial CamRARE 2023

THE NEED FOR A RARE DISEASE PATIENT PASSPORT

 

‘This is Me’ Rare Disease Passport Pilot Study

Improving transition to adult care

The Background

Patients with rare diseases often have complex care needs and more frequent interactions with healthcare due to their unique needs. Imagine having to explain your rare condition and how best to care for you or your child to a new healthcare professional or or in a stressful emergency situation when very few profressionals have training in your disease. 

CamRARE’s community of families from across the East of England, known as Unique Feet, shared their worries during the early stage of the COVID-19 pandemic.  What would happen if they couldn’t stay with their child in hospital or if were seen by clinicians outside of their normal care team?  This project unveiled a long-standing struggle faced by these families: a constant battle to share vital medical and care information with a wide range of professionals.

 

You Said. We Did

Over the last two years CamRARE has created a “This is Me” rare disease passport in collaboration with Unique Feet families and medical professionals and has piloted it’s use with families and individuals living with different rare conditions across the UK.  Whilst there were other health passports in circulation, nothing quite offered what families were asking for or captured the uniqueness of being rare.

 

Phase Two Report

Following a small pilot study with our Unique Feet families in 2022, CamRARE undertook a larger phase two pilot study in 2023 during which over 300 applied to take part and over 250 surveys were completed. People received an editable “This is Me” rare disease passport template, which they filled out and personalised and used in clinical and non-clinical settings for up to  year

The phase two report published on Rare Disease Day, 29 February 2024, delves deeper into the impact of using the passport and explores the perceptions of Healthcare Professionals and the opportunities and challenges of integrating the passport into clinical settings. 

Phase Two Pilot Study: In a nutshell

Number of applications

Surveys completed

What did respondents say were their key challenges in communicating their rare condition and healthcare needs?

Cambridge Rare Disease Network - Rare Patient Passport 1
Cambridge Rare Disease Network - Rare Patient Passport 2

What were respondents thoughts on their passport experience?

Cambridge Rare Disease Network - Rare Patient Passport 3
Cambridge Rare Disease Network - Rare Patient Passport 4
Cambridge Rare Disease Network - Rare Patient Passport 5

Phase Two Study: Unmet Needs, Impact, Next Steps

 

Unmet Needs

  • Lack of rare disease awareness and  knowledge amongst HCPs
  • Challenges communicating complex information
  • Lack of reasonable adjustments within healthcare systems
  • Belief, legitimacy and understanding of care needs
  • Lack of communication between care teams
  • Patients’ confidence in their care

Impacts…

…are seen in emergency and routine care and in non-clinical settings.

Next Steps

  • Provide a customisable Rare Disease Passport that is accessible, adaptable and free of charge
  • Improve HCP’s advocacy and adoption of the rare disease passport
  • Advocate for system changes to accommodate the needs of people with rare diseases

 

Number of applications for a NEW passport

CamRARE rare Patient Passport Phase One Study Recommendations Chart

Next Steps: Get involved and receive the newly designed ‘This is Me’ Patient Passport

We’ve created a new PDF version of the Rare Patient Passport taking into consideration the expericnes, insights and recommendations from patients and HCPs involved in the two pilot studies. 

Anyone with a rare or undiagnoised condition of any age, anywhere in the world, is welcome to use our Rare Patient Passport template to create their own personalised healthcare communication tool. 

This new passport template will launch in March 2024. 

* Individuals, parents and caregivers – register to receive a template – no surveys to fill in!

* Patient Groups – register to show interest in adopting/adapting this passport for use with your own community. We’ll be in touch.

 * Healthcare settings – register to show interest in trialing/adopting/adapting this passport for your setting.

 

Number of applications for a NEW passport

Cambridge Rare Disease Network - Rare Patient Passport 6

Australia, Sydney

Australia, Brisbane

Brazil, Rio De Janeiro

Canada, Hamilton

UK, London

France, Saintes

India, New Delhi

Hong Kong

Ireland, Dublin

Italy, Rome

Nepal, Kathmandu

The Netherlands

Scotland, Aberdeen

Northern Ireland

Wales

Sweden, Gothenburg

Spain, Barcelona

South Africa, Johannesburg

Ukraine, Kyiv

United States, Texas

United States, California

United States, Virginia

United States, Las Vegas

United States, Omaha

Italy, Val Di Pesa

Italy, Catania

Peru, Lima

United States, Delran

Germany, Eichstatt

Scotland, Fife

United States, Wentzville

Lebanon, Ballouneh

Cambridge Rare Disease Network - Rare Patient Passport 7
Cambridge Rare Disease Network - Rare Patient Passport 8

The newly designed ‘This is Me’ Patient Passport. An accessible, fillable PDF with guidance notes. Easy to update, printable flat, or fold to use with a wallet and lanyard. Access coming soon…

Cambridge Rare Disease Network - Rare Patient Passport 9
Back - Rare patient passport draft template with guidance notes Feb 2024