At the start of March, Eve and Lesley attended an event run by the Patient Information Forum (PiF) in Manchester. The event focused on evaluating and measuring the impact of health information. In this week’s blog Eve outlines the day, and its benefits to the information we produce.


The Patient Information Forum (PiF) is an independent, not-for-profit organisation working to improve the healthcare experience for the public by helping individuals and organisations deliver high quality information. They do this in a number of ways, and one of them is by holding events such as these.

The mixture of workshops, discussions and talks really highlighted how important it is for us to evaluate our work, and use this evaluation to develop and improve it. As a rare disease charity, we are continually trying to improve our patient information and patient services. Discussions brought up a number of challenges we face when evaluating, yet it was comforting to know others were also facing similar challenges. By talking to others, we were able to share our knowledge and identify some solutions.

Sharing Ideas

We started the day with an open space discussion, where the challenges health information producers experience were identified. A small group discussion was initiated, where we talked about ways we can encourage more patients to give their feedback on information and services.

I discussed the recent change to the feedback process for our National Alkaptonuria Centre (NAC). We now contact patients via telephone, as this brings more of a personal element and allows for more in-depth feedback. We also talked about what the patient can gain from giving feedback, and noted the importance of informing the patients of the continual changes that occur as a result of their feedback. aku

In another discussion group, we talked about the best ways to evaluate on a small budget. As a small charity, this is something which really affects us, and it was great to hear new suggestions from other charities and health professionals. Some of the ideas we discussed included using volunteers, collaborating with other organisations, and posting questionnaires on social media.

Evaluation Essentials

Following the discussion, Gary McGrow, a social researcher who works for the Scottish Health Council, presented his evaluation essentials. He outlined the key evaluation stages, discussed methods of evaluating and talked about the different challenges associated with each method. While several methods were acknowledged, the ultimate goal always remained the same: To use this evaluation to drive improvement.

After a delicious lunch, Debbie Hicks, the director of research at The Reading Agency, talked about her own experience of evaluating their services. The main challenge Debbie faced was that she did not have direct access to the consumer. Despite this, she was able to identify a number of different evaluation methods, such as case studies, library surveys and book sales. Debbie went on to emphasise how important this evaluation process has been in improving and developing their services to fit the need of the consumer.

Helen Campbell, the communications and membership coordinator of The SROI Network was the last speaker of the day. Helen discussed societal tendencies to focus on financial value, yet ignore social value and the importance of these social values in the evaluation process.

Why We Evaluate

The final part of the day involved a workshop session, where we identified objectives, indicators and methods for evaluating our own evaluation projects. The exercise gave us clear focus, allowing us to consider why we evaluate and what we hope to gain from it.

For our SONIA 2 trial, we ask for patient feedback to ensure the trial visit ran smoothly. We want to find out if the patient was well-informed, and if communication from staff was consistently excellent before, during and after the visit. Crucially, we want to ensure the patient feels valued as a participant in the trial.

We left the event with new ideas, new perspectives and new connections. The whole day really was inspiring in ensuring patients views are at the forefront of what we do. Thank you for a fantastic day PiF!

If you want to find out more about how to produce good information, PiF have released a brand new toolkit to inspire groups, and help them to create exciting new health information projects. You can explore the toolkit here.