Date: 05/25/2023

Chris Boynton just returned from Miami after participating in the Global Patient Partnership Summit 2023 meeting hosted by Boehringer Ingelheim.  The meeting was truly global as it took place simultaneously in Miami, Vienna, and Singapore.

Health advocates from North and South America including the United States, Canada, Peru, Columbia, Brazil, and Argentina and representing many health conditions including Scleroderma, heart disease, obesity, diabetes, psoriasis, hidradenitis suppurativa, kidney disease, cancer, pulmonary fibrosis, arthritis, liver disease and mental health met in Miami for important collaboration, networking and to discuss several challenges facing patients and patient advocacy organizations.

The meeting was highly participative and dealt with four challenges:

Empowering patients – There has been a proliferation of information and advocacy groups, but patients report a lack of involvement in individual decision making.  The empowered patient of the future lives “with” their condition, not in spite of it.  They have the resources, knowledge, confidence and access to do this.

Integrated Care – improving care outcomes through better coordination among the various healthcare practitioners patients deal with, increasing communication, use of technology, and elevating healthcare literacy.

Patients with Multiple Chronic Conditions – As treatments improve, a significant percentage of patients are dealing with multiple chronic conditions such as hypertension, diabetes, arthritis, anxiety and obesity.  Many of these are linked and people living with ichthyosis are likely to be living with multiple conditions, as well.  Coordinating treatments, prescriptions and doctor visits can be a very real burden.

Patient Experience Data – Real world evidence of life with these conditions is an important consideration in the drug approval process.  Organizations like FIRST can play an important role in gathering this information and ensuring the patient experience is properly considered and valued.

People were split into multiple groups to workshop solutions to the challenge statements with much brainstorming, ideation and eventual selection of ideas to move forward.  Much work is to be done to fully develop the ideas and bring them to fruition.

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