Connecting Rare Patients

It is already some time ago, when I started a restart of the "connect-the-patients" issue as a result of our national rare disease day activities. The need is simply to have "rare" patients at time of their diagnosis connected to other patients under the title patient friendly care.
There are many needs from patients perspective for that - think about a patient receiving a terminal diagnosis and left alone with that. While the benefits of contacts with a patient organization seem to be recognized standard e.g. in the area of cancer, the referal of rare disease patients seems not to be standard of care. For many reasons. But many patients would benefit from an immediate connection with other patients right after diagnosis - and at the time of diagnosis there is only one specialist for the field of this rare disease in the room - the doctor. Therefore it is the doctor's job, to initiate this connection, if he claims to do patient friendly care.

One of our ERN Lung's mission features, to promote excellence in care, requires exercise of patient friendly care - and therefore the connection of patients. Especially, if there are no clearly visible patient organizations for that disease (group).

My vision is to create some common statement of PAGs across all ERNs, that we consider connecting of patients a mandatory feature of patient friendly care.

Of course, there is no one-fits-all strategy for the connection of patients. While a simply recommendation of a local patient organization will do the job for common rare diseases, there are more individualized approaches needed for very rare ones. It will not always be easy, but specialists will find a way.

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During discussing one of my first drafts I have been asked for evidence, that this is a valid demand - and I was definitely surprised at that moment, because up to that second the validity of that wish was common sense to me.

After thinking twice, the situation was really not that clear anymore. Even phrases from different language areas are not that easy to transcribe. And of course, it is not really my field of competence.

Up to that moment, the wish to "connect" was for me as eligible as the wish, to have doctors "talking with the patients", opposed to care only for their test results. And I could not prove evidence for any of this demands off the cuff.
As almost any newly diagnosed patient would do for his disease, I did ask aunt google for advice and you can find my results below.

What Others said recently

• Athol Wells, president elect of the WASOG, at the Sarcoidosis UK patient day (2021-04-01):
  Participation in patient organizations is part of the therapy.
• Jean-Michel Fourrier, patient representative, at the PF summit 2021 with the lecture Supporting newly diagnosed patients:
  Immediate referal to a patient organization is not an optional, it is a mandatory task!

Connecting Patients - often wished before

• UK Strategy for Rare Diseases
  The UK Strategy for Rare Diseases (2013) starts after the global vision with a chapter on patient empowerment. On page 11/ch2.6, the first item of People want information about is how to find and contact support groups.
  
  
  Some review of the progress of the strategy, The Rare Reality – an insight into the patient and family experience of rare disease, published 2016 by RareDiseaseUK, found connecting patients still an open unmet need, listed in the firstmost position in the summary of key findings.


• RD Action - Patient Empowerment
  
  
  The RD Action output Patient Empowerment (2018) discusses many aspects of empowerment from definitions to benefits and ways to achieve them.


• ProRaris - Patient Involvement in Centres of Expertise for Rare Diseases
  
  
  Switzerland published with the report on Patient Involvement in Centres of Expertise for Rare Diseases (2016) a remarkable dedication for patient involvement - also recognizing peer support for other patients.
  Outstanding remarkable is, that this was not only a nice statement on paper or a press release. During the Swizz rare disease day event (which is more a kind of rare disease congress than a social event), Prof. Claudia Kühni presented the upcomming national rare disease register.
  
  
  This meta register, which data will be fed from all the national Centers for Rare Diseases, is expected to be started in Q4/2021 and will serve various perposes - and connecting patients is prominent in the center.


• Selbsthilfefreundlichkeit
  
  
  The Austrian talk about patient organizations and care is formed by Rudolf Forster and indicates a 6-stages pyramid on cooperation.
  This views have their roots in Germany, where the term Selbsthilfefreundlichkeit im Gesundheitswesen has been made popular by Alf Trojan since the last century with many publications and projects on Selbsthilfefreundlichkeit im Gesundheitswesen. One of the famous ones has been a project investigating results from pilots in Hamburg, the root for the German declaration of quality of Selbsthilfefreundlichkeit im Krankenhaus. Again, on the prominent 2nd rank of criteria, is the reference to patient organizations.
  Please note, this concept was created for inpatient care and at least the formulation needs some adoptions for the field of rare diesase.


• Rare Barometer
  
  
  The recent H-CARE Survey indicated a 2.1 star rating for the reveral to other patients (the 2nd worst rating in that survey results - consider what that rating means in every day living: I wouldn't buy anything in a 2- from 5-stars rated shop).
  Juggling care and daily life (2017) is the closest to the subject, but has not asked any question on the relevance of other patientes for patients daily living.
  To be honest, I was suprised, that I could not find many relevant results from Rare Barometer Surveys.
  

(Last change: 2021-05-10)