Who Owns Patient Data in Clinical Research?

A Q&A with Charlotte J. Haug, MD, PhD, MSc, International Correspondent, New England Journal of Medicine; Senior Scientist, SINTEF Techology and Society; Adjunct Affiliate, Stanford Health Policy; Oslo, Norway; charlottejohanne@gmail.com

Originally published October 25, 2017

Q: Many people are coming to believe that active patient participation will be a key to more rapid movement forward in cancer research. Data sharing can help. But who owns the data? And what rights and responsibilities are thus conferred? Your recent NEJM article provides helpful background. Can you help us better understand?

A: Exchange of data between patients and doctors is essential for the practice of medicine – and patient data are essential for medical research and progress.

Traditionally, doctors collected patients’ health information (typically the medical history, laboratory tests, drugs prescribed, outcome of treatment, etc.) and sometimes shared that information, in confidence, with colleagues to seek advice and advance science. The medical record was the physician’s property, and still is in many countries and legislations. But do physicians own the patient data? Continue reading…


Minority of Oncologists and Primary Care Physicians Fully Discuss Survivorship Care Plans With Cancer Survivors

“Of 53 National Cancer Institute cancer centers, only 43% report implementing survivorship care plans for at least some of their cancer survivors. In a study reported in the Journal of Clinical Oncology, Blanch-Hartigan et al found that a minority of a nationally representative sample of oncologists and primary care physicians routinely discuss all aspects of survivorship care or furnish survivorship care plans for cancer survivors.”


Minority of Oncologists and Primary Care Physicians Fully Discuss Survivorship Care Plans With Cancer Survivors

“Of 53 National Cancer Institute cancer centers, only 43% report implementing survivorship care plans for at least some of their cancer survivors. In a study reported in the Journal of Clinical Oncology, Blanch-Hartigan et al found that a minority of a nationally representative sample of oncologists and primary care physicians routinely discuss all aspects of survivorship care or furnish survivorship care plans for cancer survivors.”


Minority of Oncologists and Primary Care Physicians Fully Discuss Survivorship Care Plans With Cancer Survivors

“Of 53 National Cancer Institute cancer centers, only 43% report implementing survivorship care plans for at least some of their cancer survivors. In a study reported in the Journal of Clinical Oncology, Blanch-Hartigan et al found that a minority of a nationally representative sample of oncologists and primary care physicians routinely discuss all aspects of survivorship care or furnish survivorship care plans for cancer survivors.”


Reliable Pretreatment Information Assists Prostate Cancer Patients in Decision-Making

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“The benefits of patient information are broad. For many people confronted with a cancer diagnosis, information translates to greater involvement in management decisions, improved ability to cope, reduced anxiety and distress, better communication with family members, and increased satisfaction with treatment choices.”


Having That Persistent Cough Checked Out Early Can Save Lives

A public health campaign, encouraging people throughout England to go to the doctor early if they have symptoms that could indicate lung cancer, has yielded strong results. The Be Clear On Cancer campaign urged people with a cough lasting more than 3 weeks to see a doctor. In the months during which the campaign ran, 700 more people were diagnosed with lung cancer than in the same months of the previous year–an increase of 10%. Four hundred more people than usual were diagnosed in the early stages of lung cancer, when the disease is most treatable, and 300 more received lung cancer surgery. While most cases of a persistent cough are not due to lung cancer, campaign organizers stress that it is better to be safe.


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Almost half of all lung cancer patients face unwelcome delays in their cancer care, a UK survey found. The survey, conducted by the UK Lung Cancer Coalition (UKLCC), polled over 400 lung cancer patients and their care providers. Although 95% of patients named prompt referral to a hospital as a priority, only 64% had received it, and 46% had experienced delays at some stage of their care. These findings are particularly concerning given the importance of timely treatment in improving lung cancer outcomes. In addition, 57% of respondents indicated that they had not received accurate information about their lung cancer diagnosis. Based on these results, the UKLCC has developed a series of suggestions for improving lung cancer care.


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Nurse Navigators Pilot Patients Through Cancer Treatment

Receiving early assistance from a nurse navigator improves health care experiences for cancer patients, a recent study confirms. A nurse navigator acts as a point person guiding patients through the complexities of the health care system. He or she coordinates health services, conveys and explains medical information, provides psychological and social support, and acts as an advocate for the patient. A study compared cancer patients who received weekly phone calls from a nurse navigator for 4 to 5 months starting 2 weeks after diagnosis to patients receiving written educational materials. Patients who had received nurse navigator assistance felt better supported emotionally, more involved in their care, better informed, and more prepared for the future.