Adding value beyond financial support
We know industry provides a vital financial lifeline to patient organisations – a lifeline that should be transparent and documented appropriately. Those we spoke to highlighted that industry does a great job offering value beyond financial support and we found numerous examples of this in our interviews. Sometimes, however, large, well-networked, cross-functional organisations and industry can lose sight of what these attributes can also offer patient groups, particularly smaller or newer, less established organisations. When working within industry, it can be easy to take for granted the number of touchpoints available within NHS, HCP or policy audiences.
Good Partnerships
Build opportunities for patient group contacts to understand and get to know the industry, different functions, conferences, events and personnel where appropriate. The relationship can be managed by a single point of contact but exposure to the wider organisation can help deepen the relationship and spot opportunities. There may be infrastructure or activities that can further patient group goals without a need for funding.
Stellar Partnerships
Take the time to understand the profile and networking needs of the patient organisations the industry is engaged with. This can be a huge stepping stone to support the patient organisation’s profile amongst key stakeholders and ultimately improve support and advocacy for the patients they represent.
“I’m not sure I see us as ‘patient advocates’ more like community organisations working collaboratively with the NHS, really.
That’s how we should be viewed”
Catherine Bouvier
CEO & Co-Founder, Neuroendocrine Cancer UK
“Industry have tentacles far and wide, and they could use these to talk more about the patient groups they are engaged with – of course it’s important to ensure necessary checks and balances to this but it would be a big help if industry could do more to make key stakeholders aware of them, particularly healthcare professionals.”
Debra Montague
Founder and Chairwoman, ALK Positive UK
Trudie Lobban MBE
Founder and Trustee, Arrhythmia Alliance
A stellar case study
At the beginning of the pandemic, when we went into lockdown and they were shutting clinics, I called one of our supportive clinicians and said, “right, what can we do to help patients?” and they said, “we’re going to have to close our pacemaker clinics so we need to get more remote monitors out to patients”. I phoned my key industry network and said, “if the doctors get the patients’ permission, would you be able to send the monitors direct to patients?” - which until this moment was basically unheard of, and I said “If I send you our information, would you put our information in the packs, so patients then know about us?”.
We went back to the clinicians, they thought it was a fantastic idea. The doctors got permission and the GDPR element covered, industry shipped the remote monitors to the patients.
We provided education and support, industry provided the technical support and of course, the doctors provided the medical support. There was no money attached to the project, it was just about our collective effort to make sure patients were monitored and didn’t have to go into the hospital unless it was absolute emergency.
A truly patient outcome focused collaboration – that we could all be proud of.