THE NEED FOR A RARE DISEASE PATIENT PASSPORT
‘This is Me’ Rare Disease Passport Pilot Study
The Background
As a result of complex care needs, rare disease patients require frequent interactions with healthcare services, often with healthcare professionals (HCPs) who have not received any training on their condition.
Unique Feet is a Cambridge-based community group with a reach across the East of England that was formed for young people and their families living with rare conditions by Cambridge Rare Disease Network (CamRARE). The group raised concerns during the COVID-19 pandemic about what would happen if they needed to take their child to hospital, and could not stay with them or were seen by clinicians outside of their normal care team. It became apparent as this project developed that these concerns were not unique to the pandemic period, and families had, in fact, been struggling to communicate medical and care information with a range of professionals who had little or no knowledge or their child’s rare condition.
You Said. We Did
In response, CamRARE created a “This is Me” rare disease passport in collaboration with Unique Feet families and medical professionals. Whilst there were other health passports in circulation, nothing quite offered what families were asking for or captured the uniqueness of being rare.
To understand the need for a rare disease passport in the community, CamRARE undertook a phase one pilot study during which members of Unique Feet and other rare disease groups completed a pre-pilot survey, then received a personalised copy, which they filled out, of the “This is Me” rare disease passport. After having had the opportunity to put the passports to use in clinical settings, families were asked to fill in a post-pilot survey to assess the initial impact of a rare disease passport on their interactions with care teams or in non-clinical settings. To assess the long-term impact, families will be asked to provide additional feedback through feedback surveys and/or focus groups in 2023.
Phase One Report
The phase one report from November 2022 summarises the findings from the “This is Me” rare disease passport pilot study on the unmet need in the rare disease community for a rare disease passport and the potential impact that such a passport could have on interactions with care teams and in non-clinical settings.
Phase One Study: Unmet Needs, Impact, Next Steps
Unmet Needs
- Lack of awareness
- High burden of rare disease patients on their carers
- Legitimacy
- Lack of reasonable adjustments in clinical settings
- Pre-conceived ideas about care
- Inappropriate treatment
IMPACTS…
are seen in emergency and routine care and in non-clinical settings.
NEXT STEPS
- Generate more evidence on the impact of the ‘This is Me’ passport
- Create customisable rare disease passports for the needs of different individuals
- Involve a wider group of stakeholders and advocate for system changes to accommodate the needs of rare disease patients
Phase Two Pilot Study: Recruiting 200 passport users for 2023
Number of applications
Surveys completed
In response to the insights and next steps recommendations of the phase one report, we’re inviting 200 additional individuals to join the new pilot to ensure we have diverse representation and views from across age groups, disease areas, geographically and in terms of healthcare experience. If you’d like to take part in our phase two rare patient passport trial and contribute to our final report please register your interest by completing out this Google form by the end of April 2023.
Healthcare Professionals: Would a passport be helpful to you?
Do you see patients in a healthcare setting? Are you a doctor, nurse, work in A&E, or an allied health professional? Are you a rare disease expert, or perhaps you see patients with rare conditions rarely? We’d love to hear your views on your experience with health passports, if any, and whether you think this initiative would help you provide the best care for rare patients. If you’d like to participate in our phase two rare patient passport study and contribute to our final report, please share your thoughts in this short form by the end of May 2023.
