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What can pharma learn from the charity sector?

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By Alex Morton

The rise of patient-centricity in the pharmaceutical industry has been well documented, and there has been much progress over recent years when it comes to the industry understanding the needs of patients. But as someone who has come from the health charity sector, where putting the patient first is part of the DNA, I have experienced ways in which pharma can learn from the charity sector (or third sector, as it’s also known) to better support its patients.

Work with patients

Co-creation has become a term that is used a lot within our industry, but true co-creation involves engaging with patients, carers and healthcare professionals throughout the process. One of the third sector’s biggest strengths is involving people affected by health conditions in everything they do. Indeed, some charities have even gone so far as to employ a team of people with a health condition as permanent members of staff, who work with other staff members to test ideas, co-create campaigns and advise on policy decisions, among other things.

Georgina Carr, Head of External Relations and Campaigns at the MS Society, works with people with MS on a daily basis: “Co-creation has been key in the health charity sector for a long time now – it’s routine practice. We involve people affected by MS on all manner of things, from policy positions to information resources, right down to the tactics that we employ for campaigns. We do this project by project, but also have long-term strategic groups, where people affected by MS use their expertise, not only as patients and carers, but also knowledge gained from their careers.”

The key is to involve patients at every stage of the process, not just at the beginning. Keeping a constant dialogue throughout the development process allows patients to help shape ideas and solutions, and ensures that things aren’t lost in translation along the way.

Dr Doug Brown, Chief Policy and Research Officer at Alzheimer’s Society, explains how co-creation is an essential part of its research process:

“We see huge value in patient and public involvement in research, not just as participants, but in every stage – from identifying priorities, to communicating with participants and sharing results. We’d like to see a greater involvement of people affected by dementia in the pharmaceutical industry’s research.”

Speak to patients like they are real people

If there is a disconnect between patients and pharmaceutical companies, it often comes from poor communication. Communicating complex information in a simple way is a hard thing to do, but not to do so is to alienate the people you are trying to help. Health conditions affect everyone, regardless of their level of education, health literacy or social status. Initiatives such as the Information Standard, run by NHS England, give charities guidance and standards to adhere to when communicating health information, ensuring that it is evidence-based, clear and easy to understand.

Communicating research is an area that the third sector does particularly well. Dr Doug Brown explains how pharma can improve in this area:

“The pharmaceutical industry could do more to communicate with the public who are directly impacted by their work. People affected by dementia are at the heart of everything we do as an organisation and keeping them up to date is part of our day-to-day work. Phase 3 clinical trial results are often communicated well by pharma companies but earlier phase results can be buried in jargon and technical language and are not widely shared.”

Create partnerships

Within the community of health charity supporters, there is often scepticism about the intentions of pharmaceutical companies. But by partnering with charities and advocacy groups, and also with other pharmaceutical companies, the industry can create better trust and gain greater buy-in from patients. Charities often partner with each other, for example in initiatives like the Neurological Alliance, pooling resources and knowledge and working together to make life better for their patients.

Georgina Carr explains: “We recognise that the pharmaceutical industry is central to driving access to treatments, which for our charity is the number one goal. Pharma tends to get a bad rap from the media in terms of medicines being restricted due to price, which I don’t think is always warranted. But it would be great if pharmaceutical companies were more willing to work together on some of the thorny issues, especially around policy and access to treatments. Obviously, this is challenging, due to competing interests, but it can be extremely impactful.”

There is much to learn from the third sector, and the level of engagement it has with its patients. By being open to learning from charities, and collaborating with them on the issues that matter to them, there is great potential to truly make a difference to people’s lives.

Alex Morton is a Patient and Healthcare Writer from The EarthWorks. For further information on The EarthWorks and their patient-centric approach please get in touch with Richard Jones, Joint Managing Director at The EarthWorks.

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