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  • 13Dec

    The patient advocates will see you now: Model for interacting with industry

    This article featured in Cancer World, explores how Ananda Plate, Chief Executive of Myeloma Patients Europe, makes the case for changing the way patients interact with industry in favour of a model developed by the HIV/AIDS community. The traditional pharma advisory boards she refers to are meetings convened by companies, typically at the instigation of marketing departments,…

  • 15Nov

    Patient centricity is about delivering with, not for, patients

    Patient centricity starts with communication and collaboration and these are the only ways to ensure people living with rare diseases like scleroderma will be able to access potentially transformative new therapies. As part of their Listening to the Patient Voice series, Sue Farrington, PIF Chair and Chief Executive of Scleroderma and Raynaud’s UK (SRUK), told pharmaphorum…

  • 20Sep

    How people power is building patient-centric pharma

    Excerpts from an article in pharmaphorum: While everyone is agreed on the importance of patient-centric pharma, just one fifth of industry insiders said they knew “how” to achieve it. So, how do we close the gap between appetite and action? Encouraging staff to connect with their purpose is the key to building true patient engagement in…

  • 23Aug

    Listening to the Patient Voice: Collaborate to meet unmet information needs

    Excerpts from an article in pharmaphorum featuring PIF’s Chair, Sue Farrington: Pharma has a real willingness to listen to the patient voice – but how best can we turn that desire into action?   Over the next few months, pharmaphorum will be talking to representatives from a number of UK advocacy groups to find out how…

  • 16Aug

    Beyond patient centricity – supporting the support network

    Excerpts from an article in Pharmaphorum: Our new patient-centric world has already gone “beyond the pill”, and now it’s going beyond the patient. There’s a growing awareness that we need to look after the friends and family who care for their loved ones when the clinic is closed and pharma has clocked out for the night.…

  • 24May

    Pharma, stop flummoxing patients

    Excerpts from an article By Danielle Barron: Efforts to empower patients are undermined by bamboozling medical information. Is there a straight-forward solution? “If you can’t explain it to a six-year old, you don’t understand it yourself.” This is just one of the many aphorisms attributed to the preeminent physicist Albert Einstein. And this maxim is something pharma companies…

  • 16Feb

    Working with industry. Messages from patients

    This article, by David Bennett – Orphan Diseases Specialist, highlights some important themes which help bring clarity to some of the questions that persist in the industry/patient group relationship, notably around the major topics of clinical research and funding. https://www.rarebase.co.uk/blog/34/Working-with-industry.-Messages-from-the-patients  

  • 25May

    Pharma websites and ‘professionals-only’ information: The implications for patient trust and autonomy

    The aim of this study, published by the Journal of Medical Internet Research, was to determine whether there is information on pharma websites that is embargoed: Is there information that is hidden from the patient unless she attests to being a health care provider? Many pharma websites include information in a ‘professionals-only’ section. Of these, the…

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