Nothing about patients without patients

When you think of experts in healthcare, do patients spring to mind?

At Aurora, we believe that people living with conditions are the most important to consult when developing programmes or services to meet their needs.

Patients may or may not be experts on the condition they have, the treatments available to them or the health system they use, but they are all experts on themselves and on their own unique experience of care.

By consulting with them, we can understand their expectations, experiences of treatment, health behaviours and interactions with the system and use that insight to deliver services in the most efficient and tailored way possible.

Other industries have long been developing products and services in collaboration with their end users and around their end users’ needs. They call it human-centred design. Traditionally, healthcare has found it challenging to involve its end users, patients, in making decisions and consequently missed out on vital insight – the doctor knew best and ignorance was bliss.

But in recent years, a series of colliding factors such as financial pressures and empowerment of patients through increased availability of information and support online has brought human-centred design into the healthcare setting.

Secretary of State for Health, Jeremy Hunt said last October that there is an “inescapable, irreversible shift to patient power that is about to change the face of modern medicine beyond recognition”.

Patient involvement, patient participation or experience-based co-design are all terms used to describe the approach of working with patients to identify unmet needs and co-create resources to fulfil them.

It can be defined as an approach to health service improvement that aims to increase participation of patients in decisions around treatment, service development, and evaluation so that services are built from the perspectives of patients, as well as healthcare professionals.1


Patient involvement is all about working in tandem with them

Pharma also has a responsibility to ensure its patient-focused programmes are tailored to the needs of patients and this is something that has been recognised by many of the biggest companies.

Last year Novartis produced a Declaration for Patients which states: “We believe in the active participation of patients and concerned citizens to improve healthcare services and outcomes for patients.”

At Aurora, we have been working with a number of pharmaceutical companies, including Novartis, on patient involvement programmes. Most of these have been centred on the area of patient activation – working in collaboration with patients to co-create resources that help others become more knowledgeable, competent and confident in their care.

One of these programmes You Can. We Did., which has been developed to support people with psoriasis, recently launched and has been selected as a finalist for the Communiqué Awards in the category ‘Writing Excellence – Digital/Online’.

Through all of our patient involvement programmes, we have developed a tried and tested approach to working in collaboration with patients in a compliant way where they feel valued and committed to the work.

The phrase “Nothing about us without us” was first used in a health context in the 1990s by disability activists and was later popularised in the UK thanks to former NHS Patient Tsar Harry Cayton.

It is still equally relevant today and reminds us that although patient involvement as a concept has been part of the national conversation about health for more than 20 years, many services and programmes continue to be developed without the patient voice.

We believe that it is incumbent on all of us working in healthcare to make sure we include the patient perspective as a matter of course, so we can provide the most effective and tailored care possible.

Patient involvement is highlighted as one of the seven key dependencies of increasing the uptake of and flow of medicines into our healthcare systems in our Access All Areas report – Creating opportunities for improving patients’ access to medicines.

If you would like to find out more about what Aurora can do for your company using a patient involvement approach, please get in touch.

Written by Stephen O’Farrell, Senior Account Manager. Eat, Drink, Football.


[1] Tritter J and A McCallum The snakes and ladders of user involvement: Moving beyond Arnstein. Health Policy. 2006 Apr;76(2):156-68. Epub 2005 Jul 11

1 Comment

| lucy devine

Hi Stephen, Great article, It is about time accountability and responsibility became the norm between Doctor/Nurse/Pharmacist and their patient.
I work in alternative medicine and I feel my client is the heart of our healing relationship, physically, mentally, emotionally and spiritually.
Yippee Stephen.

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