The Longboat crew were delighted to attend the Partnerships in Clinical Trials Europe conference in Vienna from November 15th to 17th. As the city with the best quality of life in the world, Vienna’s reputation is very well-deserved and visitors can enjoy beautiful views of the Danube, great food, magnificent palaces and museums, and musical heritage galore.
The main 2016 conference themes were patient centricity, innovation, and collaborations, and the panel of outstanding speakers provided insights on key and current industry topics.
Leading the charge was the workshop titled ‘Patient Centricity: Practical Tips and Strategies’, led by Dr. Julie Hapeshi (Associate Director R&D/Deputy Director SW RDS, Gloucestershire Research Support Service); Cathy Emmas (PaCe Partnership Director, AstraZeneca); Dr. Andrew Gibson (Associate Professor in Patient and Public Involvement in Health Care Delivery and Research, University of West England); and Jo Welsman (Experience of Long-Term Conditions and Researcher in Involvement and Engagement).
This workshop highlighted how we, in this connected age, can work together with patient communities to hear the patient voice and deliver medicines of value to patients. Applying patient centricity initiatives strategically across organisations supports pharma companies to:
- Understand what the most important elements of the trial are
- Find out what will make patients feel engaged in the long-term
The possible approaches discussed included:
- Protocol simulations to find out what impact the protocol design has on how patients feel about the study and the possible disruption to their lives
- Patient surveys
- Building process evaluation into the trial process
- Considering the model of co-applicants as opposed to patients and clinicians
All workshop attendees firmly agreed that patient feedback indicated that they want to feel part of the process and be partners as opposed to ‘invisible’ participants. We need to ensure to ask the patients about their views directly and be more thoughtful about the terms and language we use to communicate, with patient-led charities being a good place to start. Regulators are already recognizing patient involvement as a missing piece of the jigsaw, with the European Medicines Agency (EMA) looking to engage on this topic, as well as the work of organisations such as the Patient-Centred Outcomes Research Institute (PCORI) and the European Patients’ Academy of Therapeutic Innovation (EUPATI).
Those with real-life patient experience opened and closed the following two days of conference events. The opening plenary sessions on day 1 included personal and inspiring talks by Matthew Zachary (Founder and CEO of Stupid Cancer) and Virgil Simons (Founder and President of The Prostate Net and Prostate NetEuropa, USA) about their direct experiences as patients. Sir Steve Redgrave (multi-gold-medal-winning Olympian) closed day 1 by sharing his story of what it takes to be the best in your field and how he overcame adversity to achieve the record-breaking fifth Olympic Gold in Sydney after suffering colitis and being diagnosed with Diabetes in 1997. On day 2, the closing plenary was the ‘Eulogy of Toby Peach’, a show which was first performed at the Edinburgh Fringe Festival and tells the inspirational story of Toby’s journey with Hodgkin’s Lymphoma, a cancer of the lymph nodes that he faced at ages 19 and 21.
Throughout the conference, there was evidence that the industry shift towards looking through the eyes of the patients is happening. Discussing why patient centricity should be at the core of all trials, Kieran Doran (Senior Healthcare Ethics Lecturer, University College Cork, Ireland) spoke about how the same issue comes up time and time again — patient materials are too long and too technical. He highlighted that patients have to be able to understand, retain, comprehend, and communicate a decision in order to agree consent to participate in a trial. With materials that often span 40 to 50 pages, we have to ask ourselves who is the information that is being provided to patients really benefitting, and if this level of information is actually a barrier to patient/sponsor relations.
Adama Ibrahim (Senior Clinical Operations Leader, Biogen) spoke about how Biogen conducted an end of study patient survey, and how it was extremely effective as a platform for two-way communication to drive a positive shift in patient engagement and directly find out:
- The patient perspectives and if any element was a burden
- The impact of participating in the study
Discussing patient recruitment strategies, Stefania Pirondi (Clinical Project Manager, Chiesi Farmaceutici), Holly Walsh (Senior Patient Access and Retention Services Manager, PRA Health Sciences), and Claire Meunier (Pierre Fabre) spoke about how the number of procedures per visit has increased by 30% in the last ten years. Echoing the sentiment of previous speakers, they asked if this is really necessary and pointed out that high-efficacy protocols that engage patient feedback earlier could be a better strategy. With compliance a challenge due to procedural complexities and quantities, educating patients from the start is important, and explanation and expectation management is crucial from the outset of a patient’s involvement, with examples of what worked well including:
- SMS reminders
- Using travel agencies
- Providing alerts and notifications about the study
- Direct-to-patient logistics and home care
- Using technology to communicate with patients
The above is just a taster overview of one stream of discussion during the conference, but as you can see, patient centricity was at the forefront of the agenda, exactly where it should be.
Longboat’s now famous ‘navigational buzzer challenge’ was attempted by many fresh faces as well as brave repeaters. We have added an impressive five new completers to our scoreboard. Huge thanks to all who visited us at the Longboat booth and see you again next year!