Personal health data: a new treasure for science

It’s time to make disease give, not just take. Find out more. http://t.co/m3ebqiyi78 pic.twitter.com/gZlJ78QPgp

— PatientsLikeMe (@patientslikeme) juliol 16, 2014

At seeing a survey by the Institute of Medicine (IOM) one fact stands out: 94% of Americans who are diagnosed with a chronic disease and are also social network users would be willing to donate their data to encourage research thus helping other patients like them.

In this context, the website "PatientsLikeMe", the most developed patients social network in the world, has launched a campaign to encourage the donation of data, so I invite you to see this promotional video: "Your data has a heartbeat that gives life to medical research.”

More on Personal Health Budgets in the UK

Due to the opportunity of the subject, in this second post about the Personal Health Budget (PHB) British program, I want to raise three questions: a) how the PHB process is being approached, b) what do professionals think of it, and c) illustrating another true story (in the first PHB post I talked about the case of Roger, a patient with COPD):

The 7 steps of the PHB process (according to Nuffield Trust) are:

1. Individual needs evaluation for the candidate to enter the program.
2. Elaboration of an indicative budget.
3. Identification (according to the professional team) of personal health and wellness goals.
4. Development and approval of personalized plan (there is no other requirement apart from trust).
5. Flexible money availability: directly from the pocket, intermediaries or service payment.
6. Commissioning of services and necessary supports.
7. At least a yearly evaluation.

The National Health Service estimates that this year 55,000 people with chronic and degenerative diseases and complex health and social needs, could benefit from a Personal Health Budget.

What do the professionals involved in the pilot say:

Personal Health Budgets: good beginnings in the UK

Two-thirds of hospital emergencies correspond to chronic patients’ decompensation which is why the health care system has a vested interest in helping people with chronic diseases to take care of themselves and learn to decrease their attendance to hospitals. Knowing that this can not be prescribed, the English have developed a system of budgetary self-accountability.

In 2009, the National Health Service launched a Personal Health Budget (PHB) Pilot Program in 70 localities and after an evaluation, it has been extended to the entire population, according to the following principles: People who need long term health and social care agree with their local professional teams (social services, primary care and NHS administrators) the arrangement of an amount of money that should allow them to reach the objectives of the individualized therapeutic plans previously agreed.

The PHB’s intention is that people with multi-pathologies or with degenerative or disabling diseases, have their service buying options nearby such as social services, psychological or physical therapy support. However, primary care services, pharmacies and hospitals are excluded. The first assessments offered by Nuffield Trust are positive in terms, particularly, of life quality. The economic aspects of the evaluation are more controversial as it is very difficult to quickly collect the savings of inappropriate hospital services that have been reduced thanks to PHB.

Last century belonged to the doctor, this one should belong to the patient

RT @gesclinvarela Historia oral de la Práctica Basada en la Evidencia #PBE http://t.co/jXEyQ4o3o8

— X.M. Meijome (@EnferEvidente) julio 6, 2014 

This twitter account, @enferevidente, specializing in clinical safety, has offered us the link to a paper on the history of the EBM which is a jewel in itself. If you click on the tweet, you may access a collaboratively edited video from the British Medical Journal and The JAMA Network. It’s a chat, moderated by Richard Smith, where Gordon Guyatt, Kay Dickersin, Drummond Rennie, Brian Haynes and Paul Glasziou – all ‘parents’ of EBM. There are also connections with David Sakkett, Iain Chalmers and Muir Gray. If you wish to press the play button (do it through the link in the tweet), you will see how veteran scientists explain their conversion to the, new (at that time) way of seeing clinical research, along with their views on the current circumstances.

The future of EBM from its "parents"

What interested me most, however, was the last round of the chat, when Richard Smith questions the guests about how they see the future of EBM and clinical practice, and on this I made some notes as follows:

Patient-Centered Coordination (PCC): case report

In a hospital a fragile geriatric patient dies with multiple cronic diseases

Antonio dies at the age of 88 during one of his many hospital admissions and the primary care team closes the case with the following diagnosis: a) Parkinson 7 years of evolution, b) Heart failure due to valvular dilated cardiomyopathy, c) high blood pressure, d) cardiac arterial arrhythmia by fibrillation that required pacesetter e) depressive-anxious syndrome, f) frequent urinary tract infections, and e) progressive protein-calorie malnutrition leading to death.

The daughter needed her father’s small amount of  money therefore she didn’t want to send him to a residence for the elderly.

In the two years preceding the death, Antonio showed an absolute dependence in activities of daily life with a Barthel zero. He lived with a divorced daughter who had no income, and with his two grandchildren, her children. The dependency aid (destined for the caregiver not for the professional) and Antonio’s small pension were the biggest family’s sources of income so this was always an impediment on the proposed admission to a nursing home; although it was clear that the daughter, even with little support from the municipal home help, could not meet the needs for long term attention in the period towards of Antonio’s end of life.

In the last 3 years of life, this patient had consumed more than 100,000 Euros in services, with an impressive degree of incoordination.

In  Antonio’s case history for the three years prior to the hospital admission when he died, the primary care team counted 24 attendances to the emergency room of the hospital, for very different reasons, many of them linked to heart disease, but also due to falls, fever, depression, pain in the penis, etc. Of these visits, 15 did not result in hospitalization, but, instead, almost all required attention in the short stay unit or follow-up day hospital or an outpatient clinic. Nine hospitalizations (three per year) were made in Cardiology, Internal Medicine and Geriatrics, with a total of 77 stays. Nine interventions of social work at the hospital were also counted. The activity that Antonio has generated in the primary health care and at the municipal social services has not been recorded, but there’s no doubt that it was also plentiful.