Introduction to the prototype website
for Members of the Public
All health care systems are facing the same challenges, there are more people living longer with complex diseases, modern health care can increasingly do so much more to intervene and so it is difficult to fund everything that could be done. As a result health services are having to prioritise what treatments are available and what are not - some people call this rationing.
One of the main challenges of prioritisation is when treatment is withheld from an individual or a group that is considered “needy”. This story is nearly always newsworthy and the system is easily portrayed as “being unfair” and often triggers an adverse popular response. However what is missing is the counter argument that highlights that should one “needy” patient be allocated treatment that is not very effective and is of low value then those resources are lost and perhaps many more patients will miss out on treatment that would have given them great benefit. If prioritising is to work ie. to ensure high quality care for individuals and a fair distribution of health services across all patients then the process needs to be considered robust and fair.
Health care priority setting is not a purely technical health economic exercise but involves considerations of social (societal) values. Measuring health gain, determining cost-effectiveness and setting priorities all presuppose values like fairness, responsiveness to need and non-discrimination and obligations of accountability and transparency. Yet, although there is widespread agreement on the importance of social values to health care priority setting, there is still much work to be done on how values are to be incorporated into routine day today decision making.
Over the last seven years an international collaboration of ethicists, philosophers, political scientists, public health practitioners, lawyers, health economists and health technologists have worked together to address this challenge and develop solutions to the problems. We have developed a Decision Making Audit Tool (DMAT) to help members of the public check whether the health organisations that are making health prioritisation decisions are doing a good job. The tool can be found on the DMAT page of this website.
We are also encouraging members of the public to become involved in these decisions by becoming members of advisory groups or to comment on health plans. The website invites you to send in accounts of your activities - good and bad. Sharing these experiences will help us all to do a better job
To make these issues more easily understood to patients and the public we are exploring the medium of film. I have collaborated with young film makers from the KCL Entrepreneurship Institute to produce a health prioritisation film relevant to the UK. The first film is “The lottery of Devolved Cancer Care” (this is the 20 minute version) and there is 40 minute version with more patient interviews. Both versions can be seen on the website film page. The film uses variation in access to expensive cancer drugs in the four home countries of the UK (health care is a devolved responsibility for England, Wales, Scotland and Northern Ireland). It is based on the circumstances that led a cancer patient Irfon Williams moving from Wales to England to get his treatment. He established a charity to raise the issues of differential access to treatment. Irfon died three months after being interviewed and before he could see the final film but Becky, his widow, said on viewing it, "I think it is beautifully filmed and thought provoking to those who are outside this bubble of cancer treatment".His autobiography was published in April 2018. https://www.amazon.co.uk/Fighting-Chance-Autobiography-Irfon-Williams/dp/1845276779 .
In the film, he highlights very specifically that he accepts that not all treatment can be available but considers that a fair process needs to be in place. If this was the case then he feels that patients, even if they did not receive their treatment, would accept that priority setting is inevitable. This is an aspect that was not covered at all during the many hours of news coverage of his circumstances and will be used to raise awareness of the need for public participation in these processes.
I encourage you to send in videos talking about your experience in prioritisation decisions - either as being affected by them or participating in making them.
I hope that by raising the profile of the need for fair and evidence based prioritisation together we can make a better health service for everyone
Professor Peter Littlejohns
1st March 2018
The deepest drivers of poor care arise out of fundamental inequalities of information, wealth and power. In addition to more and better knowledge, the path to right care for health systems will therefore require an activated, informed and mobilised citizenry".
Quote from Vicki Santi, President of the Lown Institute said at the launch of the Lancet Series on "Right Care" at Kings College London in January 2017