• 22 Nov

    Engaging beyond the pill – industry needs to work in partnership with patients and patient groups

    Sophie-Randall Posted by
    Sophie Randall

    A fundamental shift in the way pharma interacts with the public is on the horizon as it seeks to engage with patients ‘beyond the pill’ to demonstrate value. Industry has much to learn from the engagement expertise of PIF’s national health charity members who have worked to improve diversity in the patient voice.

    The key message from Nathalie Moll, EIPHA, and Eric Nordkamp, ABPI, at this year’s Pharma Integrates event, held in London on 12-13 November, was the need for pharma to engage with patients and the public.

    The industry’s future depends on the data it gets from patients on the effectiveness of treatments. It is hungry for data to develop better treatments for patients and demonstrate cost effectiveness to payers over the long term, as new treatments turn traditional pricing models on their heads. An example is gene therapy for haemophilia B – it has the potential to cure patients and save life-long healthcare costs, but the upfront price will be huge. Risk-sharing pricing formulas will depend on long term outcomes which can only be evidenced by patient data and Patient Reported Outcome Measures (PROMs).

    Big data and the patient voice are seen as key ‘disruptors’ facing pharma and the two are intrinsically linked because big data can only come from patients. Whether it is gathered via wearable technology, bio sensors, PROMs or the electronic patient record, the data required will ultimately come from patients. The patient information flow will change direction.

    Moving out of the industry silo

    In recent years, industry has made an effort to secure patient involvement in clinical trials but now it wants to take this into the ‘real world’.  To do this, it needs to engage with the public and is actively promoting the benefits it offers society, as can be seen with EFPIA’s We won’t rest campaign.

    EFPIA’s Director General, Nathalie Moll, said industry needed to move out of the silo. “We believe an outcomes-based system will do a better job of stimulating and rewarding innovation. The innovation that benefits patients most and supports health system sustainability. Implementing more outcomes-focused and value-based healthcare models, requires dialogue and collaboration between all stakeholders from across the healthcare community.”

    The ABPI’s Erik Nordkamp, echoed her comments. “We learn so much from listening to patients. If we don’t do that, we will not be successful.”

    What’s in it for patients and citizens?

    Clearly for patients and patient groups this engagement needs to go beyond a simple transfer of their data back to industry. The patient voice will need to be identified, be representative of the patient population, articulated and listened to.

    It also has to be asked if there is such a thing as a pharma-patient relationship or if this is more actively reflected as a pharma-consumer relationship? The term ‘patient’ implies passivity and a lack of power that is being rejected within healthcare settings where effort is being made to empower and promote participation and choice. Pharma needs to get people and citizen-centric if it really wants to work beyond the pill.

    Changing the code to promote engagement and protect data

    Nordkamp said fundamental changes will be required to the ABPI code of practice to allow this to happen. The change will require new ways of working with national health charities. A first step has been taken with a joint guide on collaboration issued by ABPI and National Voices to give better transparency to funding relationships.

    There is no doubt that people stand to benefit from the use of big data and PROMs, post-prescription. It will provide fuller information on the efficacy and safety of medicines than can be provided by randomised controlled trials (RCTs), where protocols exclude the old, the young, pregnant women and people with co-morbidities. But the public needs to consent to data sharing and understand how their data will contribute to healthcare development in a way which will bring benefit to all. They also need to have an influence on the outcomes data collected.

    Outcomes for all with data from all

    Outcomes such as the ability to work, collect children from school or reduced anxiety are meaningful to people, said Professor Roma Maguire, Strathclyde University. Her work has focused on remote monitoring and PROMs in chemotherapy.

    “Are we accessing the hard to reach that are representative of communities?” she asked. “Most people who get involved are articulate and well-educated. We need to reach into communities where the real need is. Multi-morbidities and clusters of illness mean the current research set up is not fit for purpose.” Health literacy, the digital divide and outcomes for carers also needed to be considered, she said.

    Lloyds Pharmacy has 300 nurses delivering complex medications at home to 100,000 people, said Gabrielle Silver, General Manager, Clinical Homecare. “The point of care is an ideal place to collect PROMs. Nurses see if a medication is working or if side effects are burdensome,” she said.  “We need to think more broadly about care and work with HCPs for better care where care is delivered.”

    She also argued that employers were an important source of data on health outcomes and stood to benefit from effective treatments, yet were largely ignored by industry in terms of outcome measurement.

    Creating the right forums and ethical engagement

    Simon Denegri, at the National Institute for Health Research, believes partnership with the public is good for outcomes and morally right. NIHR is working to create an environment where those voices are heard.

    “The challenge for me is getting patients involved throughout. We need more co-production-type research to deal with the health and social care challenges we face. Partnership and collaboration are key, but these are hard to build and sustain. One thing we are trying to think through is to facilitate a way for industry to connect with patient and carer groups; we want to be a catalyst for this.”

    PIF can help

    Extending engagement with hard to reach groups and bringing diversity to patient advisory boards is high on the agenda for the many national health charities in the PIF membership and it has been a recurring theme at PIF’s health information challenges and solutions workshops in the last six months.

    PIF offers bespoke consultancy services to support engagement initiatives. The PIF toolkit provides a comprehensive guide to user engagement over the long term, including hard to reach groups and this toolkit is in the process of being updated for 2019.

    For information and guidance on best practice in patient and user engagement, please contact Sophie Randall at the Patient Information Forum: sophie.randall@pifonline.org.uk


    Posted on Thursday, 22nd November 2018