On 17–18 October, more than a hundred patients, patient advocates and representatives from pharma gathered in London, UK, for the 13th Annual eyeforpharma Patient Summit Europe to discuss the importance of patient centricity in the pharmaceutical industry. Oxford PharmaGenesis was delighted to attend the Summit and to take part in a panel discussion on ‘capacity building programmes to make pharma more accessible for patients’.
During the panel presentation, Flóra Raffai from Findacure described some simple steps that pharma companies can take to be accessible to patients, including: giving a clear explanation of how they work with patient groups; having a clear policy on trust, transparency and independence; and replying to emails from patients promptly. Lizzie Perdeaux from Oxford PharmaGenesis then explained how health information routinely available in the UK is too complex for 40–60% of patients, owing to the general public’s low health literacy levels, and that this can lead to poor adherence to treatment.
One common theme that emerged at the Summit was how engaging patients at all stages of drug development can create a win–win situation for pharma and for patients. For example, patients can aid pharma with research priority setting and trial protocol design, which can improve recruitment and retention rates. Dr Pooja Merchant, from Bayer HealthCare, estimated that patient-centric trial design could save pharma companies up to $2 billion per year. In return, patients would find it easier to participate in trials and would benefit from treatments better suited to their needs.
Another common theme of the Summit was the need for a paradigm shift in health care, from a reactive ‘sickness service’ that treats patients after they develop symptoms to a proactive ‘wellness service’ that provides early intervention to prevent sickness. This would be accompanied by a shift from ‘patient-centred’ to ‘person-centred’ health care. Such a paradigm shift would be aided by the increasing sophistication and availability of digital and wearable technology, which allows health data to be used by patients, in partnership with their doctors, to make decisions about their health care.
The benefits of listening to patients and engaging with them effectively are myriad. At the Summit, Oxford PharmaGenesis asked 14 patients and advocates to say one thing about health care today, and received 14 different responses, including: the importance of asking doctors to embrace new technology to help keep patients informed; the need to provide health information to patients in a way that is fun and engaging; and the desire for more open communication about end-of-life care and dying with dignity. Just imagine what could be learned if pharma engaged with patients consistently and effectively.
If you would like to see all the responses that were collected at the meeting, please take a look at the short video below. Please do share this video with your networks; for every share of the video, Oxford PharmaGenesis will donate £1 to Findacure, a Cambridge-based charity, which provides training to patient groups that support people with rare and orphan diseases.
