Cambridge Rare Disease Network
Pharmaceutical companies, bound up by regulations and constraints, sometimes struggle to engage with the group that matter most – patients. My recent attendance at the Cambridge Rare Disease Network (CRDN) congress reminded me that patient engagement is simpler than we think. The congress gave me insight into how our agency can help big pharma become better at engaging with patients who have rare diseases.
On Monday 26th October at Robinson College, we set up our stand among 200 people from charities, universities, support agencies and pharmaceutical companies. The congress was well organised and engaging with well-defined goals.
There was a light buzz as we waited for the audience attendees.
The doors opened at 8:30am, and a stream of people flowed through the exhibits. I noticed that around one in 10 of the delegates were using wheelchairs: as they browsed the stands, they tended to just chat amongst themselves. Those not in wheelchairs struggled to engage at first, but most eventually made eye contact. We find it difficult to integrate with people who we perceive to be different, but integrating is essential in understanding each other. Indeed, at the heart of the CRDN congress was the importance of understanding the wishes of those we may not immediately identify with.
The organisation was excellent, the timekeeping superb and the audience engaged. I don’t think I have attended many events where the goals were laid out so clearly.
In a busy day there were several inspiring and educational sessions from excellent presenters. For me, one session stood out the most: seven people were invited to present their chosen charity. They were asked to summarise three wishes in 5 minutes. These pitches were impactful – they made me want to do something to help.
Of course, these honest, caring people are looking for a cure. But what they also want is for doctors to recognise the disease and diagnose it quicker. When you encounter a rare disease, it is easy to feel outrage that only 5% of these people will ever see a cure – or even an easing of symptoms. You feel you want to change the system at its very roots, or fund for a cure or organisation to offer support.
But, when you think about it, they are asking for something much simpler – a shift from working for patients to working with patients. Setting lofty goals is commendable but it is more important to establish the patient’s personal goals, rather than guessing something grander: sometimes we are trying to move an iceberg, when clearing the snow from the drive is enough.
At InterComm, we take information from clients and turn it into articles, slides or training programmes. We looked carefully at what we offer and concluded that we are story tellers. We know you have a story, and we want to help you tell it.Our mantra, telling the story, resonated with the visitors. We have written a report on the symposium, capturing the content in a readable format. We hope this report reminds delegates that the meeting was about focusing on the patient, finding practical ways to help, and building a long-term relationship based on mutual trust and commitment.
Words like ‘patient centricity’ are no substitute for engaging. As an industry, pharma has a long way to go. We still suffer from the blatant greed of a small number of people. In truth, most people work in pharma because they want to change lives for the better. Big pharma’s actions should reflect this desire to improve lives – and this starts with patient engagement. Thank you CRDN for reminding us of this.
