Earlier this year, mdgroup sponsored and participated in Plenum's webinar, hosted by pharmaphorum’s Creative & Editorial Director, Dominic Tyler, to discuss the patient role in evolving the healthcare system, clinical trials and medical information programmes.
Our VP, Patient Engagement, Dr Valeria Nicoli-Carr sat alongside a prestigious panel of experts including:
- Dr Rafael Vidal Perez, Cardiologist at University Hospital in Coruna, Galicia, ESC e-committee, Social Media Director, JACC
- Andrew Schorr, Co-Founder, Patient Power
- Dominic Jack, Senior Medical Director - Neurology & Immunology, Biopharma Global Medical Affairs, Merck
Our aim was to consider the barriers to greater patient involvement within clinical trials and to understand what more can be done within medical societies to manage expectations and improve the patient experience.
Research is performed on patients and not with patients
There is a significant effort on behalf of the regulatory bodies, the pharma industry and the medical community to give patients a voice. However, more needs to be done to represent the needs and comfort of the families and individuals experiencing clinical trials.
Too often, patients are seen purely as a source of data. While researchers need to focus on outcomes, it’s critical that members of our community come together to also represent the human issues that prevent awareness and a willingness to participate.
What are the barriers to a patient-centric approach to delivering clinical trials?
Here are the key challenges the panel identified:
Education - There is a lack of sufficient resources that articulate the overall experience and expectations of the participants and their families. Most patients seek peer to peer content from those who have experienced a trial first-hand to humanise the narrative.
There is a heavy reliance on internet searches or social media to access this information. Internet searches often reveal heavily regulated content, littered with medical terminology and a level of detail that can potentially isolate or intimidate the user.
As a consequence, content is likely to be pitched physician to physician, as opposed to physician to patient. However, patients are primarily outcome-focused and are seeking answers to questions like: ‘What are the implications on my time, energy, finances, well-being etc.?’
Social media - There are many groups, communities and conversations happening daily on social media channels around clinical trials. Dr Rafael Vidal Perez accurately compares these to the "Wild West".
Content is unregulated, disorganised and hard to moderate. Patient experience varies, research evolves and fundamentally things change quickly. All of this can lead to a dissatisfying experience for future participants seeking specific answers to specific questions.
Control - The pharma industry is heavily regulated. This makes it difficult to influence change, especially in the context of codes of practice and existing frameworks and protocol. Institutionalised inertia and bureaucracy play a large part in silencing the voices of those we seek to represent.
Time - Frontline medical staff are focused on managing the immediate problems and prioritising treatment for their patients.
Action needs to be taken to improve the quality, breadth and accessibility of patient resources surrounding clinical trials.
EUPATI (European Patients Academy on Therapeutic Innovation) is excellent at sharing patient-centric, outcome-focused content. Their YouTube channel is stocked with information around what to expect before, during and after a clinical trial and how to overcome challenges.
Widening the conversation is also fundamental to raising awareness.
Foundation Medicine recently recognised the need to broaden consumer outreach in a campaign to highlight the need for genomic testing for breast cancer. This is a great example of proactively raising awareness of the impact individuals can have on medical advancement and research.
Outside of online resources, Dr Rafael Vidal Perez, Cardiologist at University Hospital in Coruna, suggests that funding should be provided to create regulated patient groups, forums and seminars, so patients can access those who have first-hand experience of a clinical trial in order to learn from their experience.
At mdgroup we believe that introductory and aftercare programmes that top and tail participation are also a critical element to closing some of the identified gaps around communication.
It’s important to join up the conversation and give patients access to scientists and pharma at large. Modern tech means we have the ability to facilitate this inline with individual patient needs. Basic research into prefered communication methods could reveal a solid strategy for interaction and provide the wider medical community with a useful feedback loop. The learnings from which could inform further practices that invite positive change.
The data we can provide from this initiative can also help to humanise the regulation of our sector and challenge institutionalised thinking around solutions to care.
Adopting a people-first approach
Andrew Schorr from Patient Power cuts to the heart of the matter by suggesting we not only educate medical practitioners around the human-centric issues of participation but we also support them to inspire conversation by wearing an ‘ask me about clinical trials’ badge.
Andrew himself has been a participant in stage 2 trials for leukaemia research and brings a very personal perspective to the conversation.
He says patients are not treated as investors.
Andrew and his family not only gave their time, energy and commitment to the trial. They also gave their hope… not just for their own benefit but for the benefit of others who found themselves also fighting to survive leukaemia.
Andrew experienced a lack of expectation management, and he received no aftercare or gratitude for his efforts.
Without the brave and committed support of people like Andrew, life-saving drugs cannot enter the market or help pave the way towards a cure for people living with terminal or life-limiting illness.
We must find a way to articulate effectively how the contribution of those enduring clinical trials impacts society at large. And it’s integral to the success of clinical trials that patients and their families are given the appropriate level of care and support throughout the whole clinical journey.
The teams delivering the trials are juggling multiple priorities, expecting them to also prioritise their bedside manner and organisational gratitude without support to do so is a shortcoming that needs to be addressed in training.
Voices like Andrew’s must be heard so we can create a more positive experience for future patients and their loved ones.
Watch the full webinar and join the conversation!