Sharon Kell rang in to this virtual meeting to discuss the means of collaborating with pharmaceutical companies for grants and funding to enable charities and patient organisations to continue their important patient support work going forward into 2021. This meeting was organised by the Association of British Pharmaceutical Industry (ABPI) Patient Organisation Forum. Here is what was discussed:

Challenges for Patient Organisations:

  • Virtual capability of patient organisations and managing the challenges of digitally up-skilling
  • Volume of work increasing during the pandemic and continuing to work through the pandemic resulting in financial loss
  • Fundraising shortfalls
  • Responding to and processing changes in Government and consultations
  • Mental health of charity/patient organisation staff during the pandemic
  • Digital inequalities – the risk that some patient organisations won’t be able to access digital support and still require the more ‘traditional’ approaches.

Positive changes and successes:

  • Increased collaboration between patient organisations, pharmaceutical companies and government bodies
  • External environment (wider life sciences ecosystem, NHS, and Parliament) is now more responsive and ‘open’ to patient organisations
  • Greater support for workforce of patient organisations during the pandemic (mindfulness sessions, virtual social meet ups)
  • Collaboration and partnership: there are greater reach and interaction between industry and patient organisations virtually, which is something all parties should aim to continue.

The role of industry:

  • The support needed by patient groups for 2021 due to the increase in demand for services and subsequent fall in income during the pandemic, and the role pharmaceutical companies can play in this
  • There have been some COVID-19 funding opportunities for digitisation, sustainability, and different ways of working, some of which KCSN have been successful with
  • The ABPI need to understand patients’ needs and wants, perhaps by organising virtual advisory boards. These are more inclusive than face-to-face meetings, especially for patients who have to travel long distances to London etc. for meetings
  • Patient organisations may need some digital up-skilling
  • Virtual meetings have increased communication with charity partners; pharmaceutical companies and charities have spoken more often together, there is better communication from all over the country, and there is less time and money taken up with travel. The feeling is that this should continue
  • This pandemic has increased support from industry via the use of helplines, sharing of emails, and digital learning
  • However, digital work via Zoom or MS Teams is an addition to the way we work, not a replacement. It has caused additional work and further strain on resources. The industry needs to continue supporting patient organisations in niche areas, speed up grant compliance processes, and compensate for NICE/SMC work (expert patients)
  • Pharmaceutical companies need to be aware of digital inequalities and support patient groups with this next year
  • AstraZeneca is putting together a multi-company fund managed by a third party to provide core funding for charities. AZ is providing 50% of the fund, which could be a potentially innovative avenue for funding. The fund will be operational in January 2021
  • Patient groups should come together for mutual support and virtual help (e.g. Cancer52). There is sometimes a challenge to bring people together
  • The pharmaceutical grants process needs to be simplified and flexible to stop things falling through the cracks and taking a long time to be processed
  • Virtual conferences spread out over a number of days interfere with home life and are difficult to interact in (technology, PR, marketing, patients etc.).
  • The ABPI is to look into producing best practice guidance for grant applications
  • Digitisation – we don’t want to leave certain groups behind because they don’t have the knowledge or technology
  • We must keep up the pressure on the pharmaceutical companies!

 

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