Health Bill (Second sitting)
Yes. Professor Croisdale-Appleby: Fine. The Government’s move to the integrated patient record is absolutely excellent. Most of us have wanted that for a very long time, but we also recognised the IT difficulties in doing it, as well as the question of security. However, as digital has advanced, we have nutcrackers that we did not have before to crack that particular nut. I can but support that move. From the point of view of the things that really matter, the ability of a person to feel that they can tell their story once—not time and again—comes up all the time in our research. With great respect to everyone here, we are very capable of standing up for ourselves and insisting that we get answers, but the people I deal with and have the privilege of representing are often not in that position at all. They are overwhelmed when they are repeatedly asked the same question, often in a language—medicalese, if you like—that they do not really understand and feel threatened by. The single patient record is going to go a long way towards helping with that situation. It is not the complete answer but at least it does the hygiene part, as opposed to the motivator part, very well. Sarah Tilsed: It is an excellent initiative—1as the professor said, we have been calling for it for such a long time—but we really need to consider the consent and data elements. A lot of pieces of work that we have done with patients shows that people are happy with their data being shared for these electronic records, as long as they are transparent and patients know what is being done with their data—that is a really important point. The care.data initiative and general practice data for planning and research—GPDPR—were great, but unfortunately, because they did not have genuine patient involvement right from the beginning, they failed. We need to ensure that the SPR does not fail. In terms of reaching underrepresented or less-heard communities, we need to ensure that we hear from those people straightaway. How do they want this to work? Do they want to know how their data is being used? How can we ensure that people who do not use the NHS app are involved and that their data is being shared? How do we approach people who are understandably very hesitant about digital technology and electronic records?