Imagine a future where things were different…

The NHS has recently approved a new and very expensive immunotherapy for advanced lung cancer. A key factor influencing the approval decision was improvements in quality of life demonstrated in clinical trials. Because the Scottish NHS routinely collects quality of life PROMs from patients who go on to receive the treatment, it is able to monitor the effects of the drug on quality of life in a routine NHS setting. This enables the NHS to confirm that patients and taxpayers are getting the expected value for money from the treatment.

Tom completed radiotherapy and chemotherapy for head and neck cancer two months ago. Although he is starting to feel a bit better, his swallowing has been badly affected by his treatment and he is unable to swallow any solid food. He lives a long way from the cancer centre and he is completing a patient reported outcome measure called the MD Anderson Dysphagia Inventory each week on his phone. This is transferred to the Speech and Language Therapist and Dietitian at the hospital, who are able to suggest more appropriate exercises, diet and support for Tom so that he can continue to recover.

Ken is a widower and has been treated for depression in the past. He had treatment for prostate cancer a year ago, which resulted in some urinary problems and a worsening of his depression. His GP calls in to see Ken every six months to find out how he is getting on, but he knows that Ken tries to put on a brave face when he visits. Ken fills in an online questionnaire about his health every 3 months as part of a national cancer survivors audit programme. Because this data forms part of Ken’s clinical record his GP is able to get a detailed picture of how he is really getting on before he visits. One questionnaire assesses his urinary function, and the other assesses how his depression is affecting him regularly. Several years on, the same data will alert the Scottish NHS to the fact that rates of urinary problems after prostate cancer treatment vary a lot between hospitals. This has enabled a programme of service improvement in underperforming hospitals.

Gina has recently undergone a major resection of her bowel after a cancer diagnosis. She is getting used to managing a stoma and is just getting comfortable with this. She is now having an initial assessment for chemotherapy and her Clinical Nurse Specialist is concerned that the drugs may cause diarrhoea. She wants Gina to monitor her bowel movements daily, alongside other side effects of chemotherapy. Because Gina is able to record this directly on her phone using an app, her nurse is able to keep an eye on things and phone Gina to offer timely advice that prevents the diarrhoea getting out of hand.

Elsie completed her treatment for breast cancer six months ago. She has put on a lot of weight and thinks this is due to her hormone therapy. She really wants to lose weight and asks to attend the breast cancer exercise programme available in her area. Using her PROMS app, she can record weekly weights, exercise diaries and quality of life assessments on her phone. She finds it motivating to see how much things are improving. Because cancer survivors across Scotland are recording the same information using a variety of apps, diaries and also at clinic appointments, the Scottish NHS has become aware of the problem and acts by setting up dedicated lifestyle classes for cancer survivors.

Hamish has advanced lung cancer with a secondary cancer deposit in the bones of his spine. The pain had improved significantly after radiotherapy 4 months ago but is now getting worse again. The community palliative care team are finding it difficult to get the dose of his morphine right as the pain seems to fluctuate considerably from day to day. Hamish has started to use a smartphone app to record his pain level every time he needs to take extra morphine. This app is helping him and his palliative care team to get his pain better under control. Because his oncologist at his local cancer centre is also able to monitor his pain scores she knows that it is time to send Hamish a clinic appointment to discuss a second dose of radiotherapy.

The future could look like any or all of these… or something else entirely.