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Turn innovation into everyday life

Treat rare disease patients earlier and better.

Apart from the major common diseases, there is a highly specialized and fast-growing field in the rare disease sector. However, although research and development has made tremendous progress in recent years, many hurdles, such as diagnosing patients as early as possible, have yet to be overcome. Both specialist and patient target groups have special requirements.

Despite numerous scientific breakthroughs in the treatment of rare diseases, various obstacles prevent patients from receiving the required medication and therapy when they need it. Pharmaceutical companies rely on the support of specialized service providers to support doctors, patients and relatives, and pass on important information.

In everyday practice, there is no room for error

The early identification of those affected is vital. Often, five to ten years can pass before any diagnosis is made. Specially developed screening processes are a vital step: Firstly, relevant general or specialist groups are interviewed by telephone to discuss the occurrence of certain symptom patterns within their patient pools. This is then followed by the supply of information materials, which are used not only for training healthcare professionals, but also to increase awareness in the waiting room. This can then allow for more in-depth conversations and visits by external field service teams or their own scientific field staff.

Multi-channel approaches are recommended in order to meet the individual requirements of the specialized target groups: having knowledge of personal preferences and effective access routes help with the choice of means of communication, from classic faxes or letters to telephone calls and e-detailing.

Support for patients and relatives

Medical advances have a direct impact on the quality of life of those affected. However, such improvements – for example an increased lifespan – outweigh new challenges and hurdles in the everyday treatment of a rare disease. How does a patient that has been cared for as a child, adolescent, or young adult learn to continue their treatment on their own? Patients, relatives and those who are part of self-help groups will need to depend on continuous professional support.

Accessibility to various information channels and the continuous interaction with medical professionals contributes to long-term therapeutic success, and also improves the in-depth conversations between physicians and patients. In addition to telephone support, hotlines, mailings, websites or information events are also crucial.

Advanced therapies need advanced communication

New technologies provide valuable insights: Patients and doctors are already benefiting from the artificial intelligence of advanced and systematic early warning systems. For example, some apps and websites provide guided learning, with information that is more accurate than most search engines.   Ashfield Healthcare not only provides a broad portfolio of services to pharmaceutical companies with a rare-disease portfolio, but continues to expand and complement it by partnering with early-stage technology partners through AI technology such as Ada Health in Berlin and Salesforce ™, the provider of the Healthcloud ™, a holistic software for controlling patient support programs.

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Author: Benjamin Rapp is Managing Director D-A-CH of Ashfield Healthcare GmbH, a division of UDG Healthcare plc. As an international healthcare company, Ashfield redefines outsourcing and offers a broad range of world-class and market-leading services. Contact: benjamin.rapp@ashfieldhealthcare.com

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