Patient involvement

Patient involvementHave you ever used sites like TripAdvisor, Yelp or Rotten Tomatoes? We’ve all heard the adage ‘the customer’s always right’ and that’s why review sites are successful. In the commercial and retail world, customer feedback is important in shaping the product and future products and other customers benefit from the feedback. While the world of retail and healthcare are very different, the value of customer feedback is a lesson that many healthcare industry stakeholders should learn.

Patients are the customer – they are the ones receiving the healthcare products and services. The rise of the NHS Friends and Family test (FFT), introduced in 2013, where results are published in NHS choices is testament to this. Whilst patients are involved in the development of products through clinical trials, merely using patients as a check box for ‘does the product work?’ is not enough. Patients have extensive knowledge about the realities of living with their illness and the process of accessing the medication they need.

Patient involvement, Aurora’s sixth Access All Area’s dependency, is key. Not involving them is like hiring an architect and builder to create a new home and then them going ahead without any consultation with you – yes, the architect is a master at designing and the builder excels in putting these designs into action – but if they don’t ask you what you want, then with the best intentions if won’t be a pleasant home. Patients are experts, alongside doctors and scientists. They have the potential to provide a rich insight into medicine access and the barriers. For a patient, access barriers may look very different than from an outsider’s perspective. The impact of potential misdiagnosis, the time and difficulty of reaching a diagnosis, treatment lags, logistics pressure caused by service delivery requirements such as frequency or duration of hospital visits, travel time, and even car parking – all of these could hinder access to a medicine.

Getting patients involved can happen at any time in the lifecycle of a medicine. For example, some pharmaceutical companies have started involving patients in the development and design of clinical trials.

Patient involvement also reflects another key Aurora Access All Areas dependency – the use of real world data. As the trend of self-monitoring health frowns and develops, patients will gain further knowledge and insight – but also a heightened recognition of health being a two-way responsibility, which will only make their involvement all the more essential as they will increasingly demand it.

Giving patients a seat at the table first involves recognising the value they can bring. Here are a few recommendations to getting patients more involved:

  • How much do you know about patients’ experiences within the pathway of which your medicine is part?
  • Do you really recognise the unmet needs of patients, beyond the clinical trial publication or the market research report? Have you ever actually met with patients, do you really understand their lives?
  • Look at the patient pathway more holistically than just your medicine intervention. By looking more broadly, how might you contribute to securing better patient outcomes?
  • Challenge what assumptions and biases you hold towards them.
  • Are you bringing their perspective to commissioners and service designers?
  • How can you incorporate issues such as quality of life and wider societal impact into discussion and feedback?
  • What mechanisms and support can be given to help patients become equal partners in discussions?

To find out more about this dependency and the other dependencies, read our Access All Areas paper, ‘Creating opportunities for improving patients’ access to medicines,’ available for download here.

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