Five questions about feedback – answered by our feedback expert

Spotlight – 7 March 2024
When Our Future Health promises volunteers feedback, what does it mean? Dr. Cosima Gretton explains all

Dr. Cosima Gretton is our Deputy Chief Medical Officer. She started her career as an NHS doctor, and went on to develop new technology that improves healthcare. During the pandemic, Cosima worked for NHS Test & Trace, where she launched new types of Covid-19 tests for hospital workers. She joined Our Future Health in June 2023.

1. What does feedback mean?

At Our Future Health, feedback is when we offer our volunteers the option to receive information related to their health.

Let me explain that a bit.

When people join our research programme, they share a lot of information about themselves, for research purposes. This includes various physical measurements, such as their weight and blood pressure levels, and consent to link to their health records. They also fill out a lifestyle questionnaire, and they share a sample of blood from which some of their genetic information is extracted.

We combine all this data with information shared by our other participants, to create an incredibly detailed picture of the nation’s health. Taken together, it’s hugely helpful for health researchers. They can use it to spot new patterns in how diseases begin and progress, or to test new types of treatment.

Some of the information might also be interesting to the person who shared it, so we offer to feed certain parts of it back to them.

I’ll give you a simple example. When you attend an appointment with Our Future Health, you have your blood pressure measured by our staff member. The staff member writes the measurement down in a leaflet and you can take it away. That’s a form of feedback.

Of course, you can also choose not to take the leaflet away. Our feedback is always optional. If you don’t want to receive it, you won’t.

2. What feedback are you offering now?

At the end of a volunteers’ appointment, we feed back the following:

  • Height
  • Weight
  • Waist circumference
  • Blood pressure
  • Heart rate
  • Heart rhythm
  • Cholesterol levels

We send our volunteers home with a leaflet that explains how to understand these measurements and offers advice on what to do if something is found to be too high or too low.

The leaflet also explains that the measurements are for research purposes only. That’s an important point to make, because your appointment is not a health check. We’re feeding information back to you, for your interest only. We’re not feeding it back to your GP.

3. Will you offer more feedback in the future?

The short answer is… yes!

The longer answer is… yes, but it’s complicated and we’re working on it.

Towards the end of 2024 we will start to roll out feedback based on your answers to the health and lifestyle questionnaire. This could cover things like your sleep, diet, and exercise.

After that, we plan to roll out feedback that takes into account some of your genetic information. For example, we could use a combination of your DNA, physical measurements and questionnaire answers to calculate your risk of developing diabetes. (We wouldn’t just send you this feedback – we’d give you the option of receiving it first.)

I want to make it clear that this feedback will not be a diagnosis – Our Future Health is a research programme, not a healthcare provider. We would be indicating your chances (or risk) of developing a disease in the future, not whether you have the disease now.

You should also know that we’re only looking at specific parts of volunteers’ DNA, which we think will be of use to health researchers. Our data is not as comprehensive or robust as the information you receive from a genetic test that’s ordered by your doctor. We also don’t analyse your blood sample for things like vitamin levels or anaemia.

4. Why the wait for more feedback?

To get to the point of offering new feedback, three crucial things must happen first.

The first is that we get all the data in the right place. Right now, there’s a huge amount of processing going on in the background. We’re taking information from questionnaires, appointments, and health records, and putting it all in a secure digital environment. We’re also processing blood samples, so we can add genetic information.

The second is that we figure out how to return information to millions of people, in line with all regulatory requirements and without negatively impacting the health service. Our Future Health is run in partnership with the NHS, but we are not a part of the NHS, and we don’t want to overwhelm doctors with people asking questions about the information they receive. So, we’re talking to members of the NHS, to understand how we can deliver feedback without straining the system.

The third crucial thing to do is discover how people want to receive the feedback. We’re running ‘public dialogues’, where we ask people (including some of our volunteers) what information they would be interested to know, and how they would like to learn about it. By listening to their answers, we can make sure our feedback offer works for the public.

It’s a journey of discovery. No research programme has ever delivered this kind of feedback to this many people. We know we have to get it right.

5. How exciting are Our Future Health’s feedback plans?

Honestly, the potential of this programme is beyond anything the UK has ever seen before. We’ve never before had a way to conduct research at a nationwide scale and develop new ways to predict, prevent and treat disease that could be integrated in the NHS in the future.

Feeding back information to millions of people will put the UK at the forefront of preventive health around the world. We just have to be incredibly thoughtful about how we do it.

Let’s prevent disease together

By volunteering for Our Future Health, you can help health researchers discover new ways to prevent, detect and treat common conditions such as diabetes, cancer, heart disease, stroke and Alzheimer’s.

Find out moreJoin Our Future Health now