Rallying to the Challenge 2016: Data, Data, Data
This year’s theme for Rallying to the Challenge was the issue of data: big data, small data, personal data, impersonal data, what’s useful and what’s not, and how data could and should be used.
Collecting information about our personal experiences can inspire greater accuracy and urgency in research and even shape scientific and clinical expertise. This not only redefines the research landscape but even more importantly helps to personalise Parkinson’s. However, one of the pressing issues that came out of Rallying 2015 was a need to define how data is used, who has access to it, and what level of control does a person have over their own data?
We believe it is hugely important that we define how we want our data to be used, particularly as there is growing pressure for legislation to be introduced to tell us how it can be used. To address these issues we developed a survey which 389 people with Parkinson’s (PwP) completed. Overall the survey found that the majority of people are willing to share their data for research purpose but far fewer people are actually doing so. It also revealed that in many cases it is unclear whether data is fully anonymised, who owns the data that people share and who is accessing it. A full report of the survey results can be viewed here. These results formed the basis of our discussion and debate at the focus groups held during the Rallying to the Challenge meeting.
Focus group 1 was interested in indentifying what data is engaging for people to share and what data is needed. Three different types of information where identified (in terms of what should be collected); information that should never be collected, one-off information or information that can should only be collected sometimes, and information that should always be collected (figure1).
Examples of information that should never be collected were any identifying data that could be used to influence third party decisions such as issuance of a driving licence, insurance and employment as well as other personal information such as sexual preference. It was also highlighted that unique IDs should be created to provide assurance of anonymity rather than using the people’s names.
Other demographic information may sometimes be shared if necessary, for example age, sex, country of residence, date of diagnosis, employment history, family history and first/presenting symptoms.
Whereas, symptoms (e.g. motor, mood/feelings, psychosis, cognition, anxiety, depression, autonomic, speech, swallowing, pain, dystonia, sleep and fatigue) and their fluctuations in relation to ‘off’ times should always be recorded. Further to this, treatment (e.g. medication, speech therapy, physiotherapy and occupational therapy, surgical treatments and alternative therapies/treatments) as well as information about appointments with their healthcare team (e.g. when, with who, frequency, duration, wait-time; satisfaction, questions answered, shared decision making; health confidence) should also always be collected.
Focus group 2 looked at how we can inspire people to offer their information, what’s in it for them and who should own data? It was reported that the reasons PwP might share their data include:
- To make a difference for themselves and other PwP
- To take action and get involved in a larger initiative
- To be involved with the cutting edge
- To gain insights about their Parkinson’s
- Which can be shared with healthcare professionals, family and friends
- To gain more regular access to professionals
- To access to more technology e.g. PET/DAT scans
It was clear from this focus group that anonymity is vital and that the individual who is sharing their data should own the data. Exactly how the data is going to be used must always be transparent from the outset and any changes should be communicated in on-going dialogue with the person sharing their data.
It was concluded that a Parkinson’s specific Data Charter should be created recommending ‘best practice’ on the issues discussed, for both PwP sharing their data and groups collecting data. Specifically, a Data Charter would clarify what information PwP would like to share, identify how this information should be used, define how that data should be accessed, by whom and in what circumstances (e.g. frequency, viability).